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BS"D Miracle Ride A true story of illness, faith, humor - and triumph by Tzippy Caton "11th grade was so not a picnic." For 16-year-old Tzipi Caton, eleventh grade meant tests, friends, homework, and play tryouts. Then, suddenly, it meant cancer. "I was the girl who loved everything about being a girl... . My days as a JAP seemed to be changing into my days as a JACP. A Jewish American Princess turned Jewish American Cancer Patient." Facing batteries of tests and a frightening new world of IVs, biopsies, needles, and cell-destroying chemicals, Tzipi made a courageous and unusual decision. She would face the ordeal before her with honesty and with humor. She wouldn't try to play down or deny the reality of her illness; indeed, she would keep a detailed, upbeat account of the entire experience. "1 honestly believed Hashem knew what He was doing when He sent this test to me." Miracle Ride is Tzipi's journal. In this remarkable work we cry with Tzipi, we laugh at her outrageous jokes and pranks. We meet her friends, her family, and the neighbors, classmates, teachers, and health professionals who stood by her side. We learn, from the inside, the poignant and sometimes heartbreaking Stories of the cancer patients she befriended. In these marvelous entries we find courage and humor and warmth. We learn how valuable true kindness can be — and how much insensitivity can hurt. Though Tzipi's story is certainly unusual, the issues she must confront are universal: keeping relationships strong while under great strain, the often-misguided demand for "perfection" in a potential marriage partner, and, most important, our search for Hashem's Presence and mercy in a time of fear and darkness. Join Tzipi for the Miracle Ride she took, from diagnosis through treatment, and to the final fairytale ending. It's a journey you will never forget. © Copyright 2008 by Shaar Press |
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For Dr. Michael Harris who treats those in his care not just as patients, but as people |
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| Preface
by Michael B. Harris, M.D. How does it feel to have your adolescence interrupted by a disease that robs you of your freedom, childhood dreams, body image and dignity? In Miracle Ride, Tzipi Caton's diary of her experiences with Hodgkin's disease, we find out that what began as a therapeutic exercise that allowed her to vent with pen and paper, turned into an insightful description of her journey through a twisted, uncharted tunnel full of obstacles and detours. Tzipi describes with sardonic wit and utter honesty the impact that the diagnosis and treatment of a life-threatening illness had on her, her family, her friends, and the community she lives in. Tzipi is my patient. I remember well the adolescent I met on the cusp of womanhood and the woman who emerged after treatment was completed. Yet, as well as I thought I knew her, her diary taught me how much I did not know. The vignettes that fill her memoir speak of a young woman who realized the reality of her altered adolescence, unattained dreams, forever changed relationships, perceptions of community, and emotional and physical pain. The question that Tzipi asked herself is, "How do I get through this and come out intact?" She decided to be open, feisty, unyielding, and to seize moments of happiness to gird her against the many moments of challenge. She sought help from all — whether medical staff, family, friends, or understanding adults. To become reclusive she realized was a self-destructive approach. Finally, and evident throughout her writings, was a deep faith in G-d's divine plan, "... because He's the one calling all the shots." But let's not misunderstand, Tzipi was not one to sit back for the ride and trust solely in G-d; she fought for everything she held dear — her life, her values, and her relationships. Tzipi emerged victorious with a deeper understanding of her individuality, character traits, and faith. Miracle Ride is an excellent resource that teaches patients how to face a potentially deadly illness, and their families, friends, and the public how to interact with understanding, empathy, and support. Miracle Ride is a memoir that should be read by all. Michael B. Harris, M.D. |
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Forward Going Along for the Ride: A Mother's Note by Tzipi's Mother What is it like to be parents of a child with cancer? There is the anguish of seeing a child suffer, even though you trust that everything being done for her is only for the best. There is the agony of the decision making: Which hospital? Which doctor? What treatment? Which highway to take to the emergency room during rush hour? There is the constant vigilance to symptoms that might be a sign of infection. There is the struggle to make sure that the rest of the family is taken care of. And there is the prolonged tiredness that comes from being in the hospital and doing absolutely nothing. I would not be saying the truth if I didn't admit to how difficult it is to see your child suffer so deeply. No one should ever have to endure the sight of their suffering child and be able to say only, "But this is for your own good." It is a feeling of utter helplessness to see the glassy-eyed look of chemo descend on your child's face and know it's only the beginning of a long cycle. Our children are our pride and joy, the reason for us to go on. The thought that something bad is happening to a person who is in reality an extension of oneself brings intense pain. I would even venture to say that the pain of a child is felt as if it were the parent's own. Ironically, although we definitely experienced all of the above, I recall that period mostly as one of warmth and caring. There isn't and never was any bitterness about "Why us," "Why now." Only a perception of Divine Design remains with me from that time. Hashem held our hand and guided us from the diagnosis to the chupah and beyond. It was obvious to us from the start that we were being guided from Above. One day, as we were waiting for yet another test, we listed off to each other all the hashgachah pratis (Divine Providence) incidents that we had experienced. It was like a neon sign flashing in Heaven saying, "You must go through this now, but I will show you that you are not alone." For instance, it always struck me as strange that I reacted so quickly to my daughter's initial call that she felt a bump in her neck. I am very laid back when it comes to any complaints about minor aches and pains. Ordinarily I would have just said to wait a few days (or weeks) and see what develops. All that being said, it was never far from my mind that we were the lucky ones. There were so many out there who were not given the option to have their cancers diagnosed at an early stage. I recall a precious four-year-old girl who rash on her foot was misdiagnosed and now she is paralyze and another teenager with Hodgkin's who caught it at its final stages and didn't make it, or a sweet princess who relapsed after a bone marrow transplant and left us a few months later. Those were all kids in our ward. These were kids my daughter tied bandannas with, took chemo with, and whom she held hands with, as she faced her new life. 1 know that we were not more worthy in any way to 1 granted the fairy-tale ending that we had. It was just the customdesign that was mapped out for us alone. And that is what remains with me until today, the faith that whatever we must experience is directed from Above. And so it is with gratitude to Hashem Yisborach (the Al-mighty) that I am at the point of reading over this manuscript. It surprised me to see the number of references to the times my daughter cried. I reflect back to the time of her illness and I mostly recall her vibrant spirit, her sense of humor, her optimism in all circumstances, and her smile. Particularly ingrained in my mind how she used to thank me after I injected her with painful shots. When Hashem sends us difficulties He packages ther with a measure of strength to counteract them. Our strength came from witnessing my daughter's acceptance of everything that was decreed upon her. The effects of chemotherapy, her loss of hair, the loss of a social life; each one in and of itself was a cause for depression. My child, how ever, accepted it all, grew from the adversity, and emerged mature and self-confident adult. In reviewing these pages it also struck me that many people involved in our lives during that period were not mentioned in the book. At first we started revising the draft and including those who contributed in any way to making our lives easier at that time. It then occurred to me that this book was about my daughter's viewpoint during her illness. She was really too sick to be concerned about who was learning with her brothers, researching alternative medicine, or arranging for her rides when necessary. And so it was decided to leave the journal as it was written. Besides, if this were to become a book of "thank you's," one book alone would not suffice; we would need volumes. In no way, however, does the lack of mention reflect our lack of appreciation for every single family member, friend, neighbor, stranger, and organization that went out of their way to express concern, give chizuk, daven, and help with anything that we needed. Lastly, I feel that 1 would be remiss if I did not use this forum to encourage our community to rethink the way they view those who have triumphed over illness, especially when it comes to shidduchim. Those who have weathered the storm and come out with a clean bill of health are for the most part as healthy as the average person. I have observed that they usually manifest a maturity beyond their years and a sense of bitachon lacking in many "normal" people. I commend my mechutanim for entertaining the shidduch with our daughter. They could have easily gone the way of society and rejected a "sick" individual. They consulted with their Rebbe, and subsequently with her doctor, and then gave their blessing. Now the blessing comes their way with nachas from our shared grandson. I am confident that we will share much more nachas together. Obviously my thoughts and feelings are well beyond the scope of a foreword. A mother can easily write her own book of what it is like to be along for the ride their child is taking. This is the diary of my teenager, who, through her journey in life, blossomed into a most unique individual. I am proud to call her my daughter. |
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| Author's Note: Names and identifying details have been changed somewhat, but this story is true. It happened to me. |
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Miracle Ride Just a Train of Thought
It follows a set track, built by someone smarter than me who knew what he was doing. Sometimes I have my own ideas about how I'd like my train to run, but eventually, you learn that you're notthe one calling all the stops. Sometimes the ride is noisy, and sometimes it's o.k. It just depends on the ground we're covering at that point. Every so often we go through some dark spots. Sometimes they're frightening, but then we learn that they 're called tunnels, and that they lead us to places we'd never have expected to land up in. Sometimes I feel like a tunnel is too long and that I'll never get out of the dark. 17 At times like those, we learn to turn around in our seats and focus on the light of the tunnel opening behind us. And when that eventually fades away into nothing, I can turn around and I can almost always see the light at the end of the tunnel approaching. Almost always. And those times when we don't see the light at the end of the tunnel, we just learn to sit back for the dark ride, and we learn to trust the One driving the train. Because after all, He's the one calling all the stops. Motza'ei Shabbos, (after the Shabbat)October 25 2003
The first thing that went through my mind was that I must've had a brick in my neck. It was Thursday, at the end of first period, and I was bending down to get my siddur, when suddenly it hurt to move my head. Instinctively, my hands went to my neck and I felt two big bumps I'd never felt before. I put down my siddur and felt my neck again and again, all around, and pushed and poked to make sure I wasn't dreaming. I wasn't. I turned around to whisper to the girl who sat behind me; asking her if she saw anything strange about my neck, and she felt my bumps too. I was reminded of the Chicken Soup for the Soul books, where people found bumps and were then diagnosed with cancer. I told that to my friend and we both laughed loud enough for our teacher to hear and ask us to begin davening. I figured the worst it could possibly be was the result of a tick bite I had gotten over Sukkos vacation. It wasn't until lunch period that I had a chance to call my parents at work. I waited on line at the pay phone for ages and finally got my turn to call my parents, who weren't too thrilled to hear from me. We were two sisters in high school at the same time. When Faigy called, it was because she had just gotten some sort of award or the highest score on a test. When I called it was either because I was in trouble or because I wanted to go home. Okay, I wasn't a troublemaker, but I tried to get out of class a lot. I had had Epstein-Barr virus the year before and I got used to skipping school. I used to call my parents all the time to tell them I felt tired and to try and get permission to go home and miss Chemistry. Who am I kidding; I was a little monster. When I told my mother about the bumps, she thought I'd lost my marbles, but I finally convinced her that I knew my own neck and that I really did have a brick inside of it. My mother wasn't sure if I was faking just to get out of school, so we agreed that if I left school early I would really have to go to the doctor and check it out. I wasn't gaining any free time. That was fine by me. As long as I got to miss Chemistry, even the doctor was a pleasing alternative. By the time I left school, even I doubted myself. I had been feeling the bumps all day to make sure they were still there, but by the end of the day, I couldn't tell if they were bumps, or just the way my neck was shaped. When I told Dr. Rosenberg about my bumps, I think he also thought I was just trying to get out of class. Maybe he was right about the cutting Chemistry part, but when he felt my neck he told me to go to an ear, nose, and throat specialist, "A.S.A.P." I had to ask him what A.S.A.P. stood for, and he wanted to know how I got to eleventh grade without knowing that. It turns out it stands for "As Soon As Possible." Who would have guessed? When I asked Faigy if she knew what it stood for, she looked at me in the same way Dr. Rosenberg had and wondered aloud how I ever passed tenth grade. My little sister and my doctor seemed to have it in for me. Wonderful. My mother spent the entire night trying to get me an appointment with an ENT (ear, nose, and throat specialist) for Friday. The problem was, we didn't have a referral from Dr. Rosenberg and we couldn't get one until eleven a.m. the next day. Friday morning I decided that I'd had enough of doctors and referrals and bumps and that I was going to school. I was halfway out the door when my mother found a doctor who had a 1:30 appointment available and a 12:30 appointment, too. She asked me which one I wanted. I mean, is that even a question? I took the 12:30 and chose to miss school, of course. It was a good thing I took the 12:30 because we didn't get in to see the doctor until two hours later. Just when I was about to die of either boredom or the smell of the place, I was called into the examining room. The doctor was a woman who scared me half to death with the expression on her face when she saw my bumps. I thought I was going to die. Doctors with accents are so much scarier than ones who speak clear English. Everything she said sounded worse because her English was so hard to understand. The doctor prescribed what sounded like a million blood tests and a CAT scan, STAT. I had to ask her what STAT stood for and she said it stood for A.S.A.P. Good thing Dr. Rosenberg had explained that to me the day before! We couldn't get out of that office soon enough, but as soon as we did, we had to go into the lab next door to do some blood tests. Big problem. They were closed. So was the other lab we usually went to, and it was an early Shabbos. We were going nuts. We called a friend who worked at a local pharmacy, asking him to fill a prescription for Augmentin. The doctor with the accent had said that in case the bumps were the result of some virus, the Augmentin would take care of it. We got the prescription sent over, and then our friend sent us to his friend, another doctor, so that we could hear the diagnosis from a normal person. To me, normal meant someone who could tell me what was wrong with me in a language I understood. Dr. Aaron didn't accept my insurance, but he was nice and only charged us thirty dollars for the visit. He had the coolest books in his basement office; there were tons on history and Jewish philosophy, and also a lot of those "idiot guide" books all over the place. So I sat on my third examining table in two days, shut my mouth, and let him poke my neck. The doctor squinted a few times. He peeked over his glasses and then again into his glasses and then he took off his glasses and put them back on before he spoke. "It's her lymph nodes," he told my mother. I knew what those were. We learned about them in Biology. They were these things in my body that helped me fight infections. Then the doctor asked if I'd ever had Epstein-Barr virus before. I was amazed at how he knew to ask. I tried looking in the mirror to see if it was stamped on my forehead, but then the doctor told me to be a sweetheart and go wait in the waiting room while he had a talk with my mommy. Such nerve. I was sixteen. I wasn't a little kid anymore. And for the record: no one gets away with calling me "sweetheart." My mother didn't tell me what the doctor said, and frankly, 1 wasn't interested. I was busy thinking about how much work I'd missed in school. I almost flipped when I overheard my mother telling my attendance teacher that I was probably going to miss some more school because I had to go for tests. I couldn't imagine having to make up so much schoolwork, and play tryouts were scheduled for Sunday. I was not going to miss that! Sunday Blood Tests and Play Tryouts The lab that did my bloodwork was located in a Rite Aid pharmacy that opened at 9 a.m. I was going to have to miss some school, but was hoping to make it back in time for the tryouts. My mother and I got there at 8:30 Sunday morning just so that we could be the first ones there to sign the waiting list. Because we came so early, we turned out to be the first ones in line after seventeen other people. I felt bad making my parents come with me all the time and having to wait on all those long lines, but then again, as they never tired of reminding me, at age 16, I was still a minor. The clerk at the window told us that the technician would arrive shortly. In the meantime I went to explore the Hallmark aisle to look for a birthday card for my father. I was never the kind of girl who liked shopping for funny cards and those kinds of cutesy presents, so after twenty minutes I got bored. I went back to the lab to see what was going on, but the technician wasn't in yet. I explored for another fifteen minutes, buying cards for my friend Miri, whose birthday wasn't until December, but the tech still hadn't arrived. I think I bought cards for every single girl I ever said "hi" to before I learned that the word "shortly" really meant an hour-and-a-half. Finally the technician arrived, and she worked very fast. Two hours later my number was called. I hated being stuck for blood, but this technician took the cake. She was upset at my mother for letting me eat in the morning before the bloodwork and that meant she couldn't concentrate that well on what she was doing. She ended up stabbing me a few times before she got the vein. I was dizzy for a while, and when the tech asked if I was okay, I had to resist the urge to make a face at her. I know, at sixteen I was very mature. I just yanked my sleeve down and pulled my mother out to the car. I begged her to drive me to school to see if 1 could still make the play tryouts. On the way to school, I finally asked my mother about all these tests. She told me that the doctors said that the bumps could be Epstein-Barr-related because EBV has an effect on the lymph nodes. They gave me tests for EBV, mono, CMV, and Lyme disease. Most people would not test for Lyme, but because I had managed to play host to a deer tick the week before, I had to take that test, just in case. My older sister Chavy was lording that incident over me as if it had only happened because I hadn't listen to her when she said I was too old to roll down that hill with my siblings when we went apple-picking. My sister acted like she owned me ever since she had gotten married in August. Chavy and I looked very alike, but we were so different. People used to mix us up all the time, but as soon as I opened my mouth people would know I was anyone but Chavy. I came to school just in time for the tryouts, but I didn't think I did too well. I was dizzy from giving blood and I was sick from the Augmentin. Oh yeah, they forgot to tell me that it had side effects. I took the band-aid off my arm too soon after the blood test just to see how big a black-and-blue mark I could get. I got a nice big one this time, and I paraded it all around school. Like I said, I was very mature. Most people understood why Chavy and I got along the way we did. I spent all night making up the work I had missed. Eleventh grade was so not a picnic. I had what seemed like twenty-eight teachers and they all piled the homework up as if each was the only instructor we had. I spent a couple of hours talking on the phone, then (out of guilt) a couple of minutes on school-work, and then another couple of hours on the phone. Monday CAT Scans and the I.C.U. Monday morning I had no doctors to see, so I finally went to school. I can't say I was enjoying myself, but I was doing moderately okay during math, first period when all of a sudden the door to the classroom burst open. There stood the secretary. She looked up and down our quiet rows of monsters, students, whatever, then cleared her throat, pointed to me, and read from a small paper. "Your mother called and said you should not eat anything this morning. I repeat, don't eat anything! Your mother will pick you up in twenty minutes, wait outside for her." She walked out of the room at the same time that my heart hit the floor. I couldn't decide whether to be mortified at the announcement or to be excited about missing school. I quickly got over the mortification. I had just been told, "No school for you today, kiddo!" I couldn't have been happier. Miss Riegler, my Math teacher, asked where I was going. I told her that I had some tests to take care of. She asked me why and I told her because her tests didn't challenge me enough. She was too taken aback to be angry. Also, I'm too cute for people to get mad at me. Before taking the CAT scan, they make you fast for four hours. I was fine with that, but it turned out that the wait made it more like a six-hour fast for me. There was nothing to read in the waiting room but a bunch of pamphlets about kidney disease, and I couldn't make conversation with the girl next to me because she had her headphones blaring. 1 was bored and annoyed so I curled up in a plastic chair and took a nap. When they finally called me in, I had to put on the kind of gown they use in hospitals, the ones they call "I.C.U." because they're open in the back. There was a huge machine in a brightly lit room that looked kind of like a donut, except it was peach-colored. It was big and round and had a hole in the middle. I had to lie on a table and not move my head for about fifteen minutes while they scanned my neck. Then I got jabbed with an IV. The fluid in the IV was iodine. It helped highlight some things in my body so that they showed up clearer on the scan. It made me feel hot all over and my mouth tasted like I was breathing in helium. It was over quickly. I was driven back to school, where I met the Chumash teacher, who was walking out as I was coming in. She asked where I had gone and I showed her my bumps. She asked me a ton of questions and ended off by telling me that everything was going to be fine and that I shouldn't worry. I told her that I was not worried in the least. She was shocked. "What do you mean, you're not worried? You have these big bumps on your neck, why aren't you worried?" And so I ended up spending twenty minutes calming her down. Oh, boy!. Tuesday What's a Hematologist? Tuesday was just a bad day. I hadn't made up all my work and some teachers were upset with me. When I came home I spent a long time being angry and making up schoolwork (again) until I finally remembered to ask my mother about the results of my CAT scan. I should've asked her sooner because I needn't have bothered with homework. Guess what? No school for me on Wednesday either! My mother said that the scan showed masses all over my neck and as far down into my chest as the scan showed. We got in touch with Ezra L'Marpeh, and they set us up with a Dr. Robinson from NYU in Manhattan, He was a hematologist, a doctor who worked with diseases in the blood. When my mother told me I was going to a hematologist, I was pretty sure that I had cancer. I wasn't really scared of it at that point; it just seemed to be a fact in my mind. I called my friend Miri and told her everything. She and I didn't go to the same school, so I couldn't keep her updated on every second of my life, even though she's been my best friend since forever. It was a good thing we were in separate schools; if we had been together the school would have split us up anyway. We looked completely different, but were similar in that we were very grown-up and full of "maturiosity." Maturiosity is not to be confused with maturity. Maturiosity is what we called our own brand of trouble. Miri was short and petite and had the most angelic face you could imagine on a teenage girl. She had the petite nose and the big eyes and the long eyelashes required for the "I'm perfect" look. Miri used to joke that the closest she came to anything heavenly was that she was a holy terror. Miri's sister Shaindy was just like my sister Chavy. I always said that Shaindy and Chavy should have gotten to know each other, and then they'd have kept each other so busy talking about our misadventures that they'd forget to bother us. Miri suggested that we conference-call to Ayala, a camp friend whose younger brother was sick with leukemia. With my best friend on the line, I asked Ayala if her brother's doctor was called a hematologist. She told me what I wanted to know and then asked why I cared. I told her that a friend of mine was being diagnosed. Ayala, the eternal tzadekes (saint), asked me for her name so she could say Tehillim (psalms). - (It is a Jewish custom to ask for help and healing by reciting Psalms in prayer. The sick person's name is mentioned at the time the Tehillim is recited.) Caught in my lie, I told her that I didn't have the complete name yet, but that I'd give it to her once I had it. Miri and I spoke until very late that night, discussing the possibility of my having cancer. It was the first conversation we had ever had where we were both close to crying. Miri was sobbing into the phone, saying she couldn't wreak havoc without my help, and I was teary, thinking about not being there to make a mess with her. We were famous for getting into trouble together. If there was anything exciting going on, you could bet that we were either right there to see it, or were the ones to have caused it. I was upset about potentially missing out on fun times, but 1 don't know why I wasn't scared. I was worried, but not terrified. I honestly believed that Hashem knew what He was doing when He sent this test to me. He knew I could handle it, and I didn't doubt for a second He was right. I also didn't think that it was real. Yet. But I'm jumping ahead of myself.
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