In December of 1995, at the age of twenty-four, Lisa Shaw-Brawley was diagnosed with Hodgkin's disease, a form of lymphoma. Shaw-Brawley and her husband were visiting her family in California during the Christmas holidays when swollen glands sent her to see her lifelong family doctor. Only When I Sleep: My Family's Journey Through Cancer is her inspiring, first-hand account of what she learned that day and the battle she fought against cancer, based on the journal she kept from the moment she was diagnosed.
The story chronicles in detailed, compelling scenes both the emotional and physical journey of cancer, including the numerous tests and treatments Shaw-Brawley endured. Honest and forthright, the author does not disguise the bitter truth of her experience or the fear that accompanied her diagnosis. Because of this, the book will reassure newly diagnosed cancer patients that their fears-of possible infertility, hair loss and recurrence-are normal and give them guidance on facing these fears.
Only When I Sleep is also the story of Shaw-Brawley's family, and their journey through a harrowing and ultimately strengthening experience. The book is a remarkable story of family love and the commitment of marriage, which also explores the tensions and comforts of returning home as a married adult. In vivid prose, the author invites the reader into her family's home, into their hearts, and into the battle of their lives. As readers join in this journey, they will be moved, informed, reassured and assisted in their personal journey. The author's father also contributes a heart-warming journal entry of what his family endured, offering comfort and insight to every mother and father in a similar situation.
In the end, a second miracle in Shaw-Brawley's life proves to be the ultimate lesson in redemption and hope. This, coupled with her determined fight, will send a clear message of survival that will inspire and empower other cancer patients.
Chapter One
Christmas Night, 1995
I should be in bed. It's after midnight, so Christmas is officially over. As much as I have come to accept living further away from my family, it always feels good to be home.
I write by the only light in the room: a glowing angel atop the Christmas tree and the colored, blinking lights draped from limb to limb. We trimmed it just two days ago. Traditionally, we would cut down our own tree Thanksgiving weekend on my Grandma and Grandpa Shaw's mountaintop property, but with my Grandpa, so many cherished traditions have died.
My dad describes this year's tree as the Charlie Brown Christmas tree. The few branches it does possess are frail and have few pine needles. It has already begun to dry out. My parents have never been very particular about the tree that we trim, because they have always said it's the people who live here who light up our home. When my brother and I used to anxiously ask how we should begin decorating each year, my mother would say, "Decorate the tree the way you've decorated our lives."
There were times in my life that my brother and I would each receive only one gift from my parents, because that was all they could afford. The gift was always something we desperately wanted, like alloy rims for my brother's slowly built BMX bike or the typewriter I begged for that weighed more than I did and was just as loud. No matter the gift, we learned early on the meaning of Christmas. Even as the years passed and my father began to earn substantially more money, we never made Christmas lists or expected Santa to bring us everything we asked for throughout the year. We loved the gifts, but I think even at that young age, we just felt lucky to have each other.
One of my best friends used to come to our house Christmas morning and show me all of her gifts, but I never got jealous. This is the same friend whose mother was on her third marriage to a man that she didn't love but who did provide the gifts that appeared under their tree each year. I knew my life was richer. She probably did, too, because she usually spent the rest of the day at our house with my family rather than her own.
Since Wesley and I moved to Texas in early 1994, we have promised to return every other year for the holidays. There's something very special about waking up in the only home I remember living in as a child and being able to have Wesley and our dog, Huck, here with me. When I was a child, we lived in the smaller house two doors down before my parents had this one built. The times I spend awake while everyone else sleeps are always spent reflecting on the years I lived here.
I just finished watching a television interview with Naomi Judd. She was talking about remaining in remission from hepatitis C, attributing it to her spirituality, taking care of herself physically and having a positive attitude. I honestly don't know how she does it. To have something so wrong with you it could take your life—I can't imagine. I've always heard the saying about God not giving people more than they can handle, but I don't believe that always holds true. I have suffered little in my life, which makes me more vulnerable to life's unpredictable possibilities. Only in the face of genuine tragedy do most people learn of the human spirit's promise. I don't think I could be so strong. As much as I enjoy spending time alone while everyone else sleeps, I am mainly still awake because I can't stop itching. I thought for sure it was the laundry detergent or the water at home, but after washing my clothes and showering at Wesley's mom's house last week, I don't know what it could be.
I guess I will go to bed. I think I will go see Dr. McCabe tomorrow since I am here. Early tonight, I discovered that my glands are still swollen from a few weeks ago, and I just noticed another gland swollen between my collarbone and my neck. The lump is small, smaller than a golf ball, but it wasn't there earlier today. He'll be able to give me some antibiotics to lessen the swelling.
I woke Wesley up to feel the lump and asked him if I should go to the doctor. He said I should if it'll make me feel better. I'll try getting in to see Dr. McCabe tomorrow, while Wesley and my dad are golfing. It's better than waiting until we go back to Texas. I feel more comfortable with my doctor. After all, he did deliver me twenty-four years ago.
Chapter Two
December 26, the next day . . .
8:52 p.m.—As I lie here in bed, I keep asking myself if any of this is real. How stupid and naive I was to think Dr. McCabe would give me antibiotics and send me home.
I sat in Dr. McCabe's office and waited over an hour to see him. I didn't mind. I expected to wait. I hadn't been to see him since he diagnosed me with gallstones two years ago. Wesley and I had only been married for twelve days when I had my gallbladder removed. It wasn't exactly our idea of a honeymoon, but I felt much better after the surgery. That is one of the reasons I didn't mind waiting for my doctor. Every time I have gone to see him, he knows what is wrong with me, and then he fixes it. I've heard other people complain about their family doctor not treating them properly for what ails them, but I have never experienced that with him.
The wait was boring, so I sat and "people watched." Most of the patients were at least sixty years old and sat in their chairs reading magazines, trying not to fall asleep. It's been years since Dr. McCabe stopped delivering babies. My brother, Vance, was one of the first babies he delivered. My mom had a different doctor at the beginning of her pregnancy, but that doctor died when she was seven months pregnant with my brother. Dr. McCabe has been our family doctor ever since. Some of my relatives go to him as well. My Grandma Shaw used to, until she got tired of waiting. She wrote him a nasty letter about how inconsiderate it was of him to make his patients sometimes wait in the lobby for several hours. She not-so-politely informed him that she'd be taking her business elsewhere. Until my grandpa's death, he continued seeing Dr. McCabe, despite my grandma's feelings. My grandpa made the right choice. When my grandpa was bed-ridden in the last days of his life, Dr. McCabe called our family at my grandparents' home to see how he was doing. He wanted to make sure my grandpa's pain was being well-managed. Beyond the familiarity I had always known with Dr. McCabe, I knew then that a doctor who made house calls was worth waiting for.
I sat in the office and wondered what each person was there for. A woman walked into the lobby and rushed outside crying. A man followed her, and the two of them sat in their car smoking a cigarette. I hoped they weren't told one of them had lung cancer. You never know; after all, my grandpa never smoked a day in his life and he died of lung cancer. He was a diesel mechanic most of his life and was also exposed to asbestos, but if you asked him, my grandpa would have told you he would not have changed how he earned his living. He provided for his family.
My appointment was for 11:00 a.m., but I didn't have my vitals checked until after noon. I overheard the gentleman who ran outside talking to a nurse. He was being admitted to the hospital for a minor injury. He'd fallen down in a drunken stupor. I felt sorry for his wife.
That was what had the doctor running behind, admitting two patients to the hospital. I still didn't mind waiting. I was lucky to have gotten in so quickly. When I woke up this morning, Wesley had already told my dad about the lump. My dad misunderstood him, thinking the lump was in my breast. Poor guy. I bet that scared him until Wesley clarified that the lump was in my neck and was probably just swollen glands. The next thing I knew, my dad was telling me he got me an appointment with Dr. McCabe.
I was glad to find out I had lost a few pounds. Lately, with very little effort, I have managed to shed some of the weight I have been trying to lose for months.
I finally managed to see Dr. McCabe around 1:00 p.m. He walked in and started with his usual small talk, asking how my family was doing. I reciprocated. Then, he asked what brought me in to see him.
"I've had swollen glands for a few weeks, and last night I noticed another gland has swelled. It's between my neck and my collar bone," I explained.
He stood in front of me and started feeling the glands in my neck. He saw the lump and felt his way to it.
While he stood before me, I studied the lines that had accumulated on his face and the hair that had changed from black to gray in my lifetime. He was still handsome, still ran four days a week, and still tirelessly contested the statistic claiming that many doctors die of a heart attack from stress before they are old enough to retire. It looked like he was still winning.
"That's a lymph node. It shouldn't be swollen at any time for any reason," he said as he backed away. He pulled his swiveling stool over to me and sat down. With his hands folded tightly around his kneecap, he bent his left knee and leaned back. "Have you been having any night sweats or losing unexplained weight lately?"
"No, what are night sweats?" I asked, still unconcerned.
"You'd know if you were having them. So you haven't lost any weight lately?" he asked again.
"Not unexplained. Why? What would cause my lymph node to swell?" I knew I had lost some weight but my appetite had decreased lately; I assumed it was just because of my hectic schedule. Surely this weight loss had nothing to do with the lump. I didn't want to tell him about it. I was starting to get frightened.
"Well, it could be a few things, but it may be Hodgkin's disease."
"What's Hodgkin's disease?" I asked. I'd heard about a hockey player who'd had it. But then I thought it might be some type of blood disease.
"It's a disease that's very easily treated if found early, especially if it's above the diaphragm. We'll draw some blood here today and also do a chest X-ray. Then, I'll arrange for you to have an upper body CAT scan tomorrow."
"Blood drawn? Is that to check my white blood cell count?" I asked, remembering that test from the movies.
"Exactly, and it'll give us an idea about some other things as well," Dr. McCabe answered.
I got scared. In the movies, a white blood cell check meant you had cancer, but he hadn't mentioned the word cancer.
"What'll happen if I have it? Where would I get treated?" I asked. I felt the panic coming over me. It had to be a mistake.
"Let's just see what we find," Dr. McCabe said.
My first thought was that I would be going to the nearest pharmacy to pick up some medicine, but in case I was wrong, and it could get worse, I wanted to call Wesley. "I want my dad to bring my husband. I want him here with me."
"You can use this phone."
I dialed the phone while he sat in his swivel chair and jotted down his notes. I appreciated him staying with me while I called.
"Dad, would you bring Wesley up here?" I asked as soon as he answered.
"Sure, why?" he asked.
"Because Dr. McCabe is running some tests, and I want Wesley here with me. Would you bring him up now?"
"What does he think is wrong?"
"Now let's not get all worked up. Let's just wait and see what we find," Dr. McCabe interjected.
"Did you hear him, Dad?"
"What did he say?" my dad asked.
"He said for us not to worry, but will you please bring Wesley up here?" I requested again.
"Yeah, we're on our way."
"Leave now, okay?" I continued.
"Okay, we'll be right there."
"You'll tell Wesley what's going on?"
"Yeah," he reassured me.
"Okay. Hurry Dad."
"Okay. I love you, babe," he said.
"I love you," I told him before I hung up the phone.
"He's bringing him up here. What do I do?" I was so scared I could hardly stand.
"I'll take an X-ray of your chest, then while the pictures develop, the nurse will draw some blood."
"So you'll have a pretty good idea from the X-ray before I leave?" I couldn't bear waiting until later to find out something, anything.
"Yes, but we won't have the results of your blood work until this afternoon or maybe even tomorrow. Follow me."
And I did. I followed that man wherever he wanted me to go. I only saw him occasionally throughout the years, but he was the first person to ever hold me in his hands, so I put my life into them once again. I followed him to the X-ray room.
I didn't have to change my clothes, only take off my bra. I was glad to do that. The bra made my itching worse.
"Okay, now stand against this metal slab and stand up real straight. Stand still until I tell you to relax."
I did as he said. When that picture was finished, he asked me to turn and face to my left, bend my elbows, and lift my arms out in front of me. It was in that motion I realized something was wrong inside of me. Something was really wrong. My chest felt tight inside, and when I held my arms up it suffocated my lungs. It was like there was no room for my lungs to hold my breath while he did the X-ray. I knew. And from that moment on, during each test they took, I knew it was not a matter of whether or not they'd find anything, but how much they would find. I put my head down and sighed out loud. I wanted to cry, but I didn't. It's not as if I am the type of person who is uncomfortable with crying, but it seemed too soon to cry. I felt too frightened to cry. I just followed Dr. McCabe to the next room, where the nurse was waiting to draw my blood.
"You have tiny veins, Lisa. They are hiding from me today. I'm going to try and raise them up," the nurse said as she spread something warm and gooey on the inside of my arm, where the largest vein was hiding.
As we sat there waiting for my veins to cooperate, I wondered if she knew something that I didn't. . . . If she felt sorry for me, because I was having those tests.
"It wouldn't be so bad to have my blood drawn if I were finding out I was pregnant or something," I confessed.
"I know, but we'll get you taken care of," she said. "Okay, a little prick now."
As she inserted the needle, I didn't watch. It hurt a little bit, but I didn't care. I just hoped Wesley would be there soon. The nurse had me wait in the back hall while the X-rays were developing. "Doctor will be back here in a minute. You can have a seat."
"My dad is bringing my husband up here. Will you send him back as soon as he arrives?" I didn't want to sit back there alone. Just then, another nurse came around the corner and Wesley was walking behind her.
"Here she is. Look who's here," the nurse said with a reassuring smile.
"Thank you," Wesley said as he sat down.
"Are you okay? What's going on?" Wesley asked.
"I don't know. Dr. McCabe did some X-rays and the nurse drew some blood," I explained.
"What do we do now?"
"I guess we wait for the X-rays to be done. She said the doctor will be with me in a minute."
As I sat there, I felt my heart beating faster than it ever had before. I tried to keep my feet steady on the floor, but I could not control them. They shook uncontrollably, until finally, my whole body was shaking. I began to feel cold, and my teeth were chattering.
"Try to calm down," Wesley said, as he put his hand on my thigh.
"I can't. Wesley, I know something is wrong. Something is really wrong." I barely got the words out through the chattering.
"You need to calm down. Nothing is wrong," he tried to reassure me as he picked up a magazine. I didn't take that as an inconsiderate move; I know my husband well. He's never been a worrier and rarely expects the worst.
"But I could feel it when I lifted my arms," I continued.
"Feel what?"
"Feel whatever it is inside of me," I answered, though I couldn't say the word.
"He'll be out in a minute. Just calm down until he tells us what is going on."
"Okay . . . okay," I reluctantly agreed.
"Here. Read a magazine," he said as he passed one my way, but I had no interest.
Wesley skimmed through his magazine. He didn't hear Dr. McCabe talking to the nurse around the corner, but I did.
"Here's her X-ray, Doctor," she said as she flipped on the light switch to show it to him.
And that was the moment everything changed for me. The moment my life became something different than it had ever been, filling me with an agony I had never known. In that moment, as he let out a loud whistle, expressing his amazement at what he saw on my chest X-ray, something inside of my spirit that I didn't even realize I had possessed was lost forever.
"Wesley, I have cancer!" I shook even more as the words somehow escaped my mouth. It was as if I had said them so slowly that I could have run a mile, sat back down next to myself, and still heard the words as they were spoken.
"What?"
"Didn't you hear him? It's bad. It's really bad!"
"What's bad?"
"He just saw my X-ray."
Wesley seemed confused. Just then, Dr. McCabe came around the corner and as he walked toward us, his words and his steps etched a difference in my life I cannot possibly explain.
"Lisa, I'm sure you have either Hodgkin's or non-Hodgkin's lymphoma. I'm ordering a full-body CAT scan for tomorrow and a biopsy on Thursday." To some, his directness may have seemed harsh, but to me, he was being my doctor.
"Is my X-ray bad?" I dared to ask.
"It's full of something, kid. Now we just have to find out what and where it is."
"What do I do now?" I asked, looking at Wesley and realizing he was still very confused. Wesley's hazel eyes always turn greener when he cries or when he is extremely tired. Now I discovered the flecks of green also deepen in panic.
"They're on the phone now setting up an appointment for your CAT scan tomorrow, and we'll call you later with an appointment for the biopsy. If it's Hodgkin's, you've got a good chance of beating it. Let's just wait and see."
Wesley hadn't spoken a word until Dr. McCabe offered his hand to shake it.
"Thank you, doctor. Do I just take her home now?"
"Yeah. Try not to worry. We'll get it figured out."
The two released hands, then we walked toward the front desk, where the receptionist was writing down information about the next day's CAT scan. Linda, one of the nurses, asked me if I'd been sick with a cold at all. I told her I hadn't. When she asked how long the lump had been there, I knew why she was asking. She probably figured from the looks of my X-ray that it had been there for a while, but I hadn't done anything about it.
I wanted to tell her, "You're crazy to think I'd go around with a lump like this on my neck and ignore it. I just felt it at 1:00 a.m. this morning, and here I am. I didn't wait. The cancer waited. It waited to show itself, and now maybe it's too late. Now maybe it's everywhere else. I came as soon as I could. And what good has that done me? It's all over the X-ray." But, I just said, "I haven't been sick at all," as I lowered my head. Wesley took the appointment card, and we both walked toward the door.
As we exited, I thought about the people sitting in the lobby, who were there to be treated for a common cold or minor injury. Earlier, I had wondered if any of them, being so old, were there to see the doctor about cancer or something else serious. I wondered if any of them were dying. As I left the building, I thought to myself, No, Lisa. It's you who will leave here today with cancer. It's you who might be dying. I went there this morning with what I thought were my swollen glands, but I left with cancer. When Wesley shut the door behind me, I knew my life was about to change.
(c)2000. All rights reserved. Reprinted from Only When I Sleep by Lisa Shaw-Brawley. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, without the written permission of the publisher. Publisher: Health Communications, Inc., 3201 SW 15th Street, Deerfield Beach, FL 33442.
Anonymous
Posted June 20, 2003
I read this book shortly after my own diagnosis with Hodgkins Lymphoma...it was like reading about myself!!!! I learned so much from this book more than anything else I was given to read about this disease. She really made you feel everything she was going through and I knew what to expect!! It was great and I may even read it again to 'keep it real'
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Posted February 20, 2003
I started reading Lisa's book when I was first diagnosed with Hodgkins Lymphoma this year. She has helped me with the emotional journey that I have been enduring. This is the best and most informative book that I have found on this Cancer. Since I have read this.. I have given this to my partner and my parents to read while they sit with me during my journey.
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Posted September 15, 2000
I read Lisa's book after having surgery to remove a malignant melanoma tumor which was found on my back. I went through many of the same emotions she did, so her book helped me see not only what I went through, but what my family went through as well. I was fortunate in that my cancer was caught very early, thanks to my husband, and I did not have to go through chemotherapy like she did. I cried with her through the procedures she endured, and cried tears of joy at the books ending. She truely will make you feel as though you are right there in the room with her. This book is for anyone who knows someone with cancer or going through cancer, people who have had it, or anyone just wanting to know what to expect.
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Posted August 2, 2000
I recently read Only When I Sleep and wanted to say how much I enjoyed the creative visualization the author used when looking to the future despite the challenges she faced while going through treatment for cancer. Many other aspects of the book really helped me understand what it is to go through such an experience, and I think it will help me should I ever have to encounter cancer in my lifetime. Stories like these lead the way to understanding for others.
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Posted August 2, 2000
I think that the first thing a person needs when being diagnosed with cancer is to hear other stories of survival. In 'ONLY WHEN I SLEEP' there is hope written on every page. From the first conversation she has with her parents about their family doctor finding cancer to the baby that restored all faith in the possibilities of surviving, this story speaks miles for those looking for a glimpse into what can be a journey of healing. Many people experience tragedy and overcome adversity, I'm just glad I got to be a part of this story with a most happy ending.
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Posted August 3, 2000
I am an ICU nurse and have helped nurse many cancer patients back to health. Many times people like myself in the health care profession tend to get busy treating diseases and forget to treat the patients. After reading Lisa's book, ONLY WHEN I SLEEP, I was reminded why I became a nurse in the first place. Lisa's book has re-opened my eyes to the purpose of many and I wish her much success for her courage in sharing this story with those of us who choose to benefit from it. All of the nurses and physicians on my floor are reading the book and know it's making a difference in how we do our jobs everyday.
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Posted August 3, 2000
I read Only When I Sleep when it was first released in May and have since then purchased copies for many of my friends and family. Even though I have never had cancer or known anyone close to me who has, this book enabled me to see the illness through the eyes of a very courageous young woman. Let's not forget she was only 24 years-old when she wrote most of the book-- That's an accomplishment in itself! We shouldn't have to experience our own tragedies if we can learn from the strength in others'.This is the next 'Tuesdays With Morrie'.
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Posted August 1, 2000
I believe that deep down in my heart, that somethings in life need to be kept close to your own heart. I also had a near death experience like Lisa did. I had a great husband and family who supported me as much as anybody's family would through times, such as these. I feel that somethings just need to be left in the past, because, 'Life Goes On'. Every step we take through life, no matter what it may be could be our last. Every family experiences tragedy, but the whole WORLD does not need to know!!
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Posted August 3, 2000
I begin this review by expressing my heartfelt gratitude to a woman whom I have never met, that allowed readers including myself, to witness her amazing journey to wellness. Lisa Shaw-Brawley validated many feelings that cancer survivors like myself have kept hidden for many years. The general population has no idea what it feels like to be diagnosed with cancer in the 'prime' of life, endure excruciating treatments and yet realize that once the cancer has disappeared, your recovery has only just begun. I was diagnosed with Hodgkin's Disease at age 21, endured chemotherapy, surgeries, bone marrow biopsies and a wide array of invasive procedures only to find that the cancer had returned just one year later. I have been cancer-free since 1995, but I realize that being a survivor means never being able to deny many very strong emotions. I read Lisa's book in 5 straight hours and during this time I experienced such a rollercoaster of emotions, that I do NOT want to forget. In the 6 years since my diagnosis, I had been completely unable to locate a book, written by a survivor of Hodgkin's Disease, until I found this book at a local bookstore. I have never been so moved by the courage of another human being as I was by Lisa's journey. I would recommend this publication to anyone who is living with cancer, a survivor or individuals who are caregivers. No other book in print will allow you into the mind of a twenty-something individual living with and surviving from cancer. No man or woman who has not experienced cancer will ever be able to fully understand what we endure, but in reading Lisa's story, you will come as close as anyone ever could! I believe that books such as Lisa's can literally mean the difference between life and death. Survivors need books like this one to encourage them to continue fighting, so that one day, they too can call themselves survivors!! Thank you Lisa!
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Posted August 3, 2000
I found this book to be helpful in understanding what my friends and family have been going through and can only hope that it will lead to more compassion as we all conitune on our journey. I have five friends who had/have cancer before they were 28. Reading Lisa's book really helped to ease the anger of seeing people being sick so young and put the focus back onto faith. Lisa you have inspired me to give something back. I am forming a team for our local 'Relay for Life 2000' team event to fight cancer. This is a major fundraiser for the American Cancer Society. I encourage other supporters and survivors to look for an event in their area. We all face challenges in our lives, some more difficult than others, but with courage, hope and faith we can all become a little better because of them. Lisa proved that in her book. Read it and see what it can do to help you.
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Posted July 18, 2000
This compelling acount of a young woman's triumph over Hodkins Disease is very insightful and informative and would be of special interest to anyone involved with cancer. However, the story told is so genuinely human and heartwarming that anyone will be moved by reading it.
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Overview
In December of 1995, at the age of twenty-four, Lisa Shaw-Brawley was diagnosed with Hodgkin's disease, a form of lymphoma. Shaw-Brawley and her husband were visiting her family in California during the Christmas holidays when swollen glands sent her to see her lifelong family doctor. Only When I Sleep: My Family's Journey Through Cancer is her inspiring, first-hand account of what she learned that day and the battle she fought against cancer, based on the journal she kept from ...