Cancer Is A Cage

By Elizabeth Barry and Lynn Barry

A first person account of a lost battle with Cancer. Elizabeth Barry's personal hand written journals describe her physical and emotional trials before and during her Lymphoma diagnosis and treatment. The book chronicles her thoughts, feelings and experiences in an unedited format. This is not the story that we often read of the smiling cancer survivor.
The loss of her battle is a result that is often ignored in the big business of cancer fund raising, which seems to focus mostly on the "happy survivors", ignoring the devastating effects on patients and their families. The countless millions raised by well-meaning contributors continue to be poured into drug research rather than patient care, often at a rate of less than 50% of what is raised.


Elizabeth's story reminds everyone that there are countless individuals suffering throughout the world, and it is the purpose of this book to focus more attention on the daily battles they wage against pain, fear and isolation.

• Language: English
• Publisher: BookBaby
• Release date: Dec 1, 2012
• ISBN: 9781624885372

Book preview

Introduction

I am Elizabeth Barry’s father, Lynn. The previous words Elizabeth wrote represent how she felt during much of her illness. It is November 2012 and it has taken me over two years to finish this. I had regularly put it off as I found it painful to read her journals. I had initially read sections after finding them while packing up her condo. I had also posted some of them on a blog. The blog was an outlet for me so I could do something – and hold on to a connection with her I did not want to lose. The more I read, the more I realized that, although hers was not necessarily a unique story, this was an opportunity to provide some first person perspectives on a situation that is lived every day.

If this book inspires one person to do something, or helps one individual or family to get through their journey, it will be worth it.

The story begins with Elizabeth’s writings about the loss of her Mom. Valerie Wilson Barry passed away on April 28, 2002 after a two year battle with Melanoma. Elizabeth had just turned nineteen when her mother passed away. Elizabeth had become Val’s primary caregiver. She gave up her first year of university to assume that role. This experience had a great effect on how she viewed her own illness and how she reflected on her mother’s.

Elizabeth began experiencing some medical issues in 2008. Her journal entries are a window into her struggles as she came closer to, and experienced her journey with Lymphoma. The writing is not grammatically correct; the words are as she wrote them. I believe her intent was to use them as a basis to write a story when she finished treatment. She never had that opportunity. My hope is that her words, presented in their raw form, will relay a better sense of hers and others’ realities. The comments I have added were written while transcribing the journals. All of my comments are in italics.

Lynn Barry

Elizabeth and her Mom Valerie in 2002.

Chapter 1

Memories

I wish for normalcy. I want the dull and mundane. Sadly my quest has been more failure than success. I am still in the midst of it all but I will start at the beginning where most stories start and we shall see where we end up.

I wander aimlessly picking at random things trying to find those pivotal moments; the landmarks and turning points. Life is a succession of hills and plateaus. One never stays put in the same place for long…though often we have the illusion of being stuck in certain places. The future pulls us on, sometimes kicking and screaming; other times we run recklessly forward, running from the past. By second, by minute, by hour, by day, time brings us to the next point.

There is little relevance to my first memory. It is of my grandmother’s kitchen. I guess I would have been a year or two old. My grandma used to take care of me during the days before my brother was born. At that time my mother was a social worker in the big building over the mall in Oshawa. I remember how the kitchen floor at my Grandmother’s was covered in a brown scratchy carpet (it is still the only kitchen floor I have ever seen with carpet). Everything in my world was so big and I was small in it. I remember perpetually looking up. Throwing my eyes around the room. I now realize just how small I was. It has been frozen in time. There are only slight differences. The floor is no longer carpeted but covered in a stone looking vinyl tile. It peels now where the chairs have rubbed over it. The pictures on the fridge have changed and the bottom drawer no longer belongs to my toys. Everything else is in its same place; the green canisters, the frog that holds the scowering pad and the wooden napkin holder. Even the green felt tea cosy still sits beside the microwave.

The atmosphere has always been consistent and I wonder if that is the significance of the memory. Nothing in life has ever remained constant, but my grandmother’s kitchen remains the same. There is the permanent smell of baker’s yeast and onions. This is warm and familiar. The faces that frequent the kitchen have changed as well. The family has changed, evolved, shedding layers and acquiring new faces. Life goes on, people move, other pass on into other worlds. Even the pattering claws of the dogs has changed, faded and returned again. It always feels like summer in that kitchen. I want to remember my mother in that kitchen, smiling and in the sunlight. In my memories of her she is the summer, warm and carefree.

I spend hours washed over in nostalgia, trying to keep my memories from failing, polishing the images to keep them clear. Freud calls this regression, escape from reality because perhaps the past is less threatening. It has already happened. It is predictable and it is known. I think I agree. At the same time I run from parts of it - parts of it that are raw and still have not healed. This is grief. They are engrained in my mind like tattoos. I am always tied to the past. We are all products of it. Today is a consequence of yesterday. Yesterday is a consequence of the day before and so on. So we push forward, up those hills in search of a plateau to call home. Maybe some of us are lucky enough to find it or at least create it for ourselves. Others I believe find their place to rest in death. And may they rest in peace. May they be in the sunbeams that shine down on us through the summer storms.

There is something strange about sun showers; something contradictory. A bright sunny expanse hanging over the earth, bright and warm, yet drops of cold water cover the ground, creating ripples in the water. The sky is happy yet it cries. They say in all our lives a little rain must fall, but sometimes it pours and sometimes we can barely keep our head above water.

Where does one begin with grief? Or perhaps a better question would be; where does grief begin? Is it at the instant of loss or is it when the pain of separation sets in? They tell us to write what we know. What I’ve known for quite some time is the condition of death and loss. It is one that grips and pulls at every part of the soul. It is blinding and debilitating. However, some of us do come through it relatively unscarred, but for others it has become a life long illness, relentless and overwhelming. And we all come through it fundamentally changed. Grief started for me two years before Mom’s death, before the final separation and disappearance of body, mind and soul. It was gradual and it progressively transformed reality. It gave me new eyes and an awareness I have never been able to explain. I fell out of the world and began looking in.

Most of the time I feel frozen. I have heard it called arrested development but I don’t think this is entirely accurate. Development is not solely determined by the presence of certain people, or lack thereof. Time has pushed forward and life continues to progress. I feel like I am in limbo, in a sort of halfway dimension. Partially there - but partially absent. I go on but I am constantly pulled back. What would I go back to? Years of suffering and misery? That would not be fair. Maybe it is not the desire to go back but the fantasy of how life would have been had things been different back there, in the times of yesteryear.

I believe that grief is intensely personal. For me it is something to hang onto. I do not want to let it go for fear of not doing justice to her memory. If my pain should ever stop I feel as if I have not remembered her properly. I do not want to leave her behind yet whether I move on or not she will always remain the same. She will stay where I leave her. I will spend most of my life trying to bring her with me. This junction is where I have stopped and I am completely unsure of the direction to take. I am growing older and catching up to where she stopped: forty-nine, sick, unhappy and so desperate for release. She will stay the same. My own situation has changed drastically but I feel no different from the day she died. I feel no older but even younger, a scared and lonely child. An orphan named Annie.

So I start now where my grief started. I remember what I was doing before life suddenly changed gears. I was in bed, in my room, staring at the wall contemplating all the trivial inconveniences of an adolescent. It was a day in late May. My bedroom was warm. I was seventeen and I’d just gotten my first tattoo, a butterfly on my ankle. A week earlier we were at a cousin’s wedding. We had walked on country roads stealing moments away from the rest of the family. On that day I lie on my bed in the afternoon sun. That day my mother would announce cancer in her system. There were no details. We were told that her body was fighting foreign agents. She made it sound like an undercover mission to destroy enemy spies while trying to save the hostage: her body.

It felt like a dream and I fear I have been dreaming since. I try to trick myself into believing that it is a dream and one day I will wake up into the world the way it once was. It is absurd but no matter what, this reality is hard to accept. I want to scream because I feel like Alice fallen into the rabbit hole and I can’t climb out. So I must constantly remind myself what day it is, what time, what year it is. In order to stay in the present I have to remind myself of who I am and where I am. I am a person. I am alive. I am forced to agree that life is really okay. Perhaps not great, but okay is good enough for now.

I knew very early on that I was not going to get my mother back. Whether I believed it, even now is irrelevant. I wanted the passionate woman back who loved to dance and sing and play the piano. The woman who painted and loved to garden; to make beautiful things. The woman with the most genuine infectious laugh. I wanted a healthy mother, not one who spent her life in the dark where she found solace from the harsh light of day. My mother, over a period of years, turned from a vibrant woman to a defeated creature, tired of being chased by the demons destroying her body. My pillar of strength crumbled and thus I became hers.

Chapter 2

Mom’s Battle

It has become a mission for me to figure out exactly what happened, which is impossible. It started as a mole on her back. A small dark piece of skin. It mutated itself with the help of the sun. They removed it and claimed that they had caught it all. A biopsy was eventually performed confirming melanoma (the most deadly of the skin cancers) that they had claimed to have captured. A year or so later, I’m not entirely sure of the timing, lumps appeared under her arms.

I remember the agony it caused her. My grandmother tried mustard plasters to reduce whatever it was that was wrong with her. They could not identify these lumps. It was not until three months later that cancer was confirmed in the lymph nodes. I was not told until weeks after the diagnosis. My parents carried this secret.

As far as we knew the cancer had confined itself to the lymph system. Still her blood was being poisoned. She would lose her strength to fight. We were told that all germs must be eliminated at all costs. No one was to enter the house even with a slight runny nose. Our house became a matter of sanitation, a prison of sorts from the outside world.

The first operation went smoothly and they removed most of the lymph nodes. They assured us again that the cancer was under control and a six month session of chemotherapy would surely kill the remaining cells. The day before the treatments were to commence my mother discovered more lumps. The second operation did not run so smoothly. The surgeon nicked her lung and air began to collect under the skin making her look like a bullfrog. Soon after the chemo started.

It made her ill and sensitive to any odour. Along with the rule of no germs, a new rule eliminated any perfume or scented objects in the house or anywhere near my mother. I remember being at my grandmother’s house around Christmas. She had a scented candle burning and we had to air out the house in December because my mother began to wretch.

That summer I was forced away for a vacation for a month. A desperate guilt overwhelmed me and I felt like I had abandoned my mother. I think I knew she was dying and who would want to be away from someone with whom you had so little time left? When I came back my Dad had swept her off to the Florida Keys to swim with the dolphins. This was her dying wish and one of her last weeks of happiness. We found out that sometime throughout her rounds of chemo that her oncologist had knowingly continued her hormone replacement therapy which had tripled the rate of cancer growth.

Over the following winter she was declared clean of cancer. It was a miracle - and hugely inaccurate. No one thought to check the rest of her body. How, after giving her a prognosis of six weeks could the cancer miraculously disappear? Another question: if she was going to die anyway why all the chemo and surgery? When the cancer was proclaimed dead my mother was on cloud nine. She announced it with smiles all over her face. She was upset we weren’t as happy with her. I wanted to cry. I knew better. It was too good to be true.

And it was. We went another year or so pretending she was fine. All the while her migraines were growing more excruciating. She was spending all of her time in bed. Yet no one made the connection. No one checked her head. No CAT scans, no PET scans, no EEG’s. Every other possible cause was named and discarded: old spinal injury, encephalitis, epilepsy, and apnoea and so on and so forth.

I was working as a nanny between high school and university to earn some money. On New Years I fractured my foot and was on crutches for a few weeks. My mother, despite crippling migraines, drove me to work. One morning she saw spots. She said it was like parts of her vision were missing like absent puzzle pieces or missing sections of a movie screen. We went to her regular Monday afternoon appointment where she was immediately sent to an optometrist who promptly ordered a CAT scan. My mother was vomiting constantly; her head on the verge of exploding.

I had a sickening suspicion of what it might be. I believe she did too but she was in the process of convincing herself it was an impossibility. I went on the internet and looked up the symptoms. She had all the symptoms, except one. She had not had a seizure. I held onto that one thing as I went to a friend’s house to watch a movie. When he drove me home that night I watched the sky knowing completely that tomorrow everything would change. I knew it with absolute certainty.

February 7, 2002

My mother was not feeling well. She was nauseous and weak. She asked me to drive her to the specialist’s to get her CAT scan results. I felt like there were rocks in my stomach. I concentrated on the gas gauge in the car and on the directions to the doctor’s office. We drove and she tried to roll down the window, the one that always stuck in cold weather. We were driving over the highway. She said she was going to throw up. There was a plastic bag in her hand. We turned onto a less busy road and started heading east. My mother was very quiet. The next time I looked over at her she was convulsing. Her body was banging off the door and she was foaming at the mouth. I screamed at her trying to get her to respond. I called 9-11 from my cell phone. When the seizure ended after five or ten minutes or a hundred years later - I thought she had died right there. She was sleeping.

We spent most of the night in the ER at St-Mike’s Hospital. My mother was dehydrated and still vomiting. She had total memory loss. She did not know us. She couldn’t tell us what year it was. We waited until ten o’clock that night for a neurologist to hand us the results of the CAT scan that we should have had at nine o’clock that morning. My Dad and I were stunned…my mother was conscious and aware then. My grandparents were in the waiting room. I had an idea of what was going on. The doctor walked up with his intern. He told us with a stone face what I already knew. She had three visible brain tumours: two which they could operate on and one that was in the centre of her brain and they could do nothing to remove it. And yes, it was deadly. She wasn’t going to get through it this time but they were going to operate anyway. My mother covered her face in her hands and kept saying no over and over again. All she could do was cry.

Dad left to tell my grandparents. They showed us pictures of the tumours while I held my mother’s hand. They would operate. We kept a notebook for my mother of all the happenings in the hospital because she could not remember. She would attack us sometimes, pull her IV’s out or lock herself in the bathroom to smoke - my bad ass mother! Sometimes she would just eat and chat like nothing was wrong, though her memory was less than stellar.

A week later she was coherent and restless. I was terrified of bringing her home but she was adamant to leave. We started rounds of radiation at PMH and she came home. I quit my job because it would be me taking care of her. There was talk of hiring a full time nurse and putting a hospital bed in my grandparent’s living room so she could stay there. That was ludicrous. My mother was coming home. I knew there was no other option.

After my mother lost her mind, I only saw a few last glimpses of her before the disease claimed her soul. Of the two years that her cancer hovered, the worst of it was how it took over her person. She slipped in between two worlds. She saw things and people we did not. My mother was no longer my mother, but a body with a short circuiting switchboard that did not know my name.

I count the months and the days since she died. I remember the last days she was home quite vividly. It was the day I broke one of the most important promises I had ever made. I woke up from a sleepless night. Meds were every hour on the hour and I had not had a decent night’s sleep in at least a month. I woke up that morning with a sense of dread in my stomach. My mother had declined rapidly over the previous week or so and it was getting harder and harder to take care of her. I was half carrying her half dragging her to the bathroom when she said she needed to go. She couldn’t walk more than a few steps without falling over. I wasn’t sure whether it was atrophy, or the cancer, or malnourishment or the drugs or a combination or whether it was simply