Liberation: Breaking the Chains to Survival and Freedom – a True Story

Copyright © 2013 Karina Carrel

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ISBN: 978-1-4525-0958-7 (sc)

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The author of this book does not dispense medical advice or prescribe the use of any technique as a form of treatment for physical, emotional, or medical problems without the advice of a physician, either directly or indirectly. The intent of the author is only to offer information of a general nature to help you in your quest for emotional and spiritual well-being. In the event you use any of the information in this book for yourself, which is your constitutional right, the author and the publisher assume no responsibility for your actions.

Front cover design: Karina Carrel and Paul Carrel

Ribbon design: Karina Carrel and Paul Carrel

Graphics: Rimma Campos

Author photograph by: Aaliyah Carrel

Balboa Press rev. date: 05/02/2013

CONTENTS

1   Finding the extent of your strength

2   Trust your instincts

3   Your tears show your greatest courage

4   One day at a time

5   Get angry

6   Never lose your heart

7   Hold on to your support system

8   You can do anything

9   Taking back control

10   Find your power

11   Living in the light

12   Through the fog

13   Find what makes you happy

14   Confucius says: ‘Our greatest glory is not in never falling but in rising every time we fall.’

15   Finding a balance

16   Rebuilding your life when you hit rock bottom

17   Think of all the beauty that remains

18   The supporters

19   Sur-vi-vor—noun [ser-vahy-ver]: a person who continues to function or prosper in spite of opposition, hardship, or setbacks

FOR MY CHILDREN

In the time I was down and reaching my end

Drowning deep into a despair that would send

All of us spiralling into a place

Of pain staring cancer in the face

You saw through the hurt of my tortured soul

Filled with the pain, you tore down that wall

With an unconditional love to heal

You brought me back to life, to feel

To my three angels, you saved me

From fading and giving in to the sea

Of darkness that battered and bruised my being

You pulled me through to the light, seeing

I’m alive and breathing because of you

I survived its wrath because of you

I am stronger now because of you

The pieces are back together, because of you.

INTRODUCTION

This is not just a story—this is my personal cancer journey. My name is Karina and I’m a proud Hodgkin’s Lymphoma survivor. Thousands of people around the world are fighting or have survived both Hodgkin’s or non-Hodgkin’s lymphoma. Thousands have also lost their lives to this type of blood cancer that you never really hear of. Lymphoma is the sixth most common cancer in Australia, but it is overlooked on a global scale.

Sadly, in some cases, it can take a lymphoma patient anywhere from six months to a year, or sometimes even longer, to discover their tumours. The symptoms it carries are often ignored, simply because there is not enough awareness of it.

In Australia, an estimated thirty-one people each day are diagnosed with blood cancers, which claim more lives each year than the better-known cancers. As blood cancers are the second biggest cause of cancer in our country, more awareness is imperative.

Before and during my experience I researched the internet but I could only ever find medical information filled with complicated terminology. It would only confuse me more than I already was and scare me beyond mere fear. I’d get impatient reading things written in point form or essay length reports in what seemed like another language.

I craved personal details. I wanted to read the experiences from a cancer fighter’s point of view: real human beings expressing real human emotions, not text book descriptions.

My mission is to shine a light on lymphoma—to bring about the recognition and understanding that is needed: that this disease is just as serious as other cancers—to give all of who have fallen to it a voice.

I have written about my journey with honesty and in detail. My hope is to help cancer patients who are going through, or about to embark on, their own cancer journey—that they may find some ease, hope and strength through my words. Although every cancer journey is different and unique, the emotions and physical changes are similar, no matter what type of cancer we battle. Somehow we are all connected through the same fight: our fight for life.

I also hope to provide some knowledge for each person involved—supporters and loved ones—to gain a better understanding of what many of us may go through in our silent times. Because sometimes with knowledge comes comfort.

Going through a journey with cancer can be hard. Harder than people could ever imagine. The word ‘cancer’ alone used to send gut wrenching shivers down my spine. Now it’s become a part of my reality. To go through the illness and months of not knowing what to expect at the end of it all, can be mentally and physically exhausting, creating emotional distress for not only the patient, but everyone else involved.

Being a mother and having a family put extra pressure on me to try to lead a normal life. On the days that I was feeling like a train wreck, like I’d been run over by a semi-trailer, I wouldn’t tell anyone and pretend I was fine. I was perpetually worried about my children and my family.

My three children are the absolute world to me. If anything were to happen to any of us, it would be my worst nightmare. Yes, they can drive us crazy and our house can often be mistaken for a circus, but I love my family.

It was hard enough for them to watch me go through so many physical changes, so I’d hide my raw emotions and deal with them in my own time and anywhere I could—in the shower, on the toilet, even while driving, wherever I found the time to be alone. Not wanting to burden my family with my problems, I doubted my own self worth, absurdly consumed with guilt for putting my family through the trials of having cancer.

In hindsight, I think pretending to be fine was what ‘saved’ me, so to speak, because pretending would eventually turn into optimism and strength, by making a promise to myself to do anything and conquer anything. Eventually, I would become my own unstoppable super hero, developing tunnel vision, entirely focused on the end result. Giving in to cancer and everything that comes with it wasn’t an option. Liberation was my quest.

My husband Paul and I always knew we were destined to be together. We had our children early and didn’t feel the need to rush into marriage. We went against everything traditional and did it all backwards. It took us eight years to make ‘us’ official and get married.

It seemed our lives were on the right track. We felt blessed. There were no problems or dramas in our lives, and even though Paul and I were in love, we became a bit, well, monotonous. After being together for ten years I thought that was normal.

In the months to follow, I would only dream about having that monotony back.

Before my illness, we lived with my parents. My father had been going through some serious health problems and needed my care. Little did we know at the time that I would be the one needing the help.

Around that time I saw documentaries about mothers going through chemotherapy and looking after their children during their ‘dark’ days. They’d describe those days as hell on earth, when the chemotherapy took its toll on the body and when the fatigue of treatment along with a roller coaster of emotions took over.

Those women and their stories would affect me for days. Even through their sadness, they were so inspiring to me. Instead of letting the sadness take over, they would simply push themselves to change their mind-set and enjoy the smallest of moments with their kids. As difficult as it looked to be in that situation, they always managed a smile.

I remember thinking, ‘I hope that never happens to me. I hope I never get cancer.’ I didn’t know what was more terrifying, cancer or chemo. I was simply an outsider, someone that didn’t understand anything about cancer and who took life for granted. Without knowing it at the time, those documentaries opened my eyes for what lay ahead of me.

Without a doubt, chemotherapy was a time of crisis for my family and me. However, we all took it as it came, adapting ourselves around a new life with cancer. Then we readjusted to life after cancer when the treatment was over with the understanding that everything could change in a blink of an eye.

I have my battle scars and chemo stripes, and I wear them with pride, embracing survivorship and the gift of life. Taking each day as it comes, I now have a different perspective: what it means to be alive and live in the moment. Cancer changed me emotionally, mentally, physically and spiritually. I know my truth. I know my pain. I know the extent of my strength.

Renouncing my spirit at the beginning of my journey would have created a different outcome, but I’m a cancer survivor, and I’m proud of what I went through. This is my new normal, and that is all that matters.

1   FINDING THE EXTENT OF YOUR STRENGTH

March 2009

Soon after giving birth to my third child, my beautiful son, in February 2009, very small symptoms started to appear.

I knew something was wrong, but at the same time I didn’t understand what was happening to me.

I cherished being a stay at home mum. Looking after my newborn baby boy while my daughters were in school was the highlight of my day. Having the two older girls, (Aaliyah. aged seven and Monique. aged six), and watching them grow so fast, I knew that every minute at home with him was precious. This time around, I was determined to appreciate all the special moments of being a mother with my baby—the good times along with the tough times.

Wanting to give him the best of everything from the day he was born, I decided to express milk for him, as breast-feeding was never easy for me.

I had developed mastitis twice by the time he was four weeks old. Even though I’d had it before, there was something different about the infection this time. I felt a ‘pulling’ sensation in my chest and it didn’t seem right to me. It was a tightness starting from my jawline, running down the side of my neck to the left side of my chest. I’d feel it when I lifted my chin up towards the ceiling. This was something I’d never felt before? Or was it?

I kept looking up to the ceiling and prodding that part of my neck, but I couldn’t feel anything with my fingers. Was that feeling supposed to be there? I convinced myself it was part of the infection. I took antibiotics and trusted my body to get back to normal quickly. It always did.

This time would be different.

April 2009

I started feeling the ‘pull’ more often, sometimes daily, especially while taking a shower and washing my neck. The infection was gone, but this pulling sensation was still inside my chest. It was then that I began to worry, and for a split second I wondered if it could be breast cancer.

I laughed at myself. Although the pull was slightly near my breast, the sensation was strongest down my neck so it couldn’t be breast cancer. Feeling like an idiot, I mentally slapped myself upside the head and told myself to stop being a drama queen.

I researched some websites about mastitis to find out what could be creating this sensation. The information gave the impression that tightness and pressure in the chest and neck areas were typical symptoms and after effects that could sometimes last for weeks after the infection had been cured. I relaxed.

After a few days, the fact that the pulling was still there bothered me, and alarm bells began ringing. Something just didn’t feel right. I went to my GP to ask his advice, also asking for an X-ray for my own peace of mind. Unfortunately, I couldn’t have an X-ray as I was still expressing. However, the doctor reassured me that the tightness would eventually stop on its own within a week or two.

Two weeks later I stopped expressing milk as the pull was becoming uncomfortable. Even so, I ignored it.

July 2009

After my son had turned five months old, I began feeling the sensation a lot more, along with a firm pushing sensation against my throat on the same left side, especially when stretching my arms above my head. The weird part was that I hadn’t expressed milk for over two months. Surely it couldn’t be the after effects of the mastitis.

When I went back to the doctor, he examined me and told me everything seemed fine and not to worry. He felt my neck and the whole area around my left shoulder and chest and gave me the all-clear. There was nothing out of the ordinary. The verdict was that my breast tissue was still recovering from the mastitis.

Life continued, with the dreaded morning routine of getting the kids ready for school, repeating myself 50 million times before 9 am: ‘Eat your breakfast, swallow your food, get dressed, brush your teeth, stop fighting.’ Oh, the headache. Then drive to school like a maniac because we were always running late. I’d spend the rest of the day looking after my son, living an uneventful life.

Craving a break from monotony, I joined an aerobics class, desperate to lose the massive 37 kg I’d gained during my last pregnancy. It felt good to have time to myself, even if only for an hour. Strange things started happening soon after the warm up. Not only did I feel the tightness and the ‘pull’ a lot stronger than usual, but I couldn’t breathe! Something was constricting my natural ability to take in a deep breath!

The room started spinning, as I couldn’t get any air! I was suffocating, but from what? Feeling like my food was about to be sprayed all over the floor, I grabbed my bag and ran out of the room. As I tried to get some oxygen in and open my lungs, I started panicking. All of a sudden, I had a sharp stabbing pain through the left side of my upper body, to the middle of my back. I wrenched the neck of my shirt, desperate for air. Had I pulled a muscle or was I having a heart attack?

I grabbed my Ventolin and tried to calm myself down, because panicking wasn’t helping. Slowly, through the rasping in my throat, my breath came back. I told myself that I couldn’t breathe because I was overweight. That was it. Completely embarrassed, I went home.

But something was definitely wrong: in the shower I checked for the tightness again. Yes, it was still there, but it was now joined by a sharp pain in the left side of my chest. Just to test myself, I tried to take a deep breath in, but found that the breath became obstructed halfway. With it, pain stabbed through my spine. I had a sinking feeling in the pit of my stomach.

During all this time, there had been a constant fist of pressure against my neck, but only then did I realise it. Still, in the throes of denial, I told myself once again that I was being stupid.

August 2009

About a week later I developed a cold and an irritating dry cough I couldn’t seem shake. The cough prevented me from speaking normally, ending all of my sentences, and the syrups didn’t do a thing.

That weekend I went to see Pink in concert and spend the night in the city with a group of girlfriends; I struggled to keep up with everything and didn’t feel like partying. I just wanted to curl up in a bed. That huge difference in my normal energy was even noticeable to my friends. As I sipped my drink, my body began to ache and set off mild sharp pains through my chest.

I felt tired and nauseated by the cough that wouldn’t let up. Something definitely wasn’t right, and for other people to notice it, I knew I needed to do something. Maybe I was getting the flu. Maybe I needed antibiotics.

After that weekend, I went to a different doctor.

I mentioned the ‘pulling’ sensation and told him that I’d had it for the past five months. He reassured me like my other doctor that everything was fine, and diagnosed the symptoms as the typical after effects of mastitis. It didn’t make sense. How could it still be an after effect after all this time? The sinking feeling in the pit of my stomach returned.

I was given penicillin for the flu, and told to go home and rest. Looking forward to recovering and having a normal conversation again without all the coughing, I convinced myself that I’d be fine.

Slight body aches began two days into taking the penicillin, resembling the aches at the onset of flu. I thought nothing of it until the following day when the aches became stronger. I couldn’t understand why I was getting these aches two days into taking the medication. Shouldn’t I be feeling better? The aches and pains started to worsen but thinking they were another side effect, I kept taking the medication.

By day four I couldn’t move without being thrown into bouts of excruciating pain. The slightest movement would knock me down in agony. I’d find myself screaming, as if I were being beaten and tortured inside my body, as if all the muscles in my chest and the upper half of my back were being ripped out from under my skin! The pain would rip through my arms down to my fingertips, and would go on for hours.

I tried all types of over the counter pain relief we had at home and nothing worked. When the onslaught of pain stopped for a few minutes, I was left breathless and sweating with my heart racing and pounding in my ears. I thought it had to be an allergic reaction to the penicillin, so I stopped taking it.

Through the agony I struggled to move, let alone walk. I had no choice but to keep being a mum and keep moving. I started overdosing on pain relief, taking anything I could get my hands on, but nothing relieved it. I pictured some rare disease eating away at my muscles. What’s wrong with me?

Collecting the kids from school one afternoon, I couldn’t walk without hunching over and hugging my chest and rubbing my arms. It was pure torture. When I’d try to straighten my body, the pain would stab into me like a thousand knives digging into the middle of my back. Something was undeniably wrong.

Wanting a third opinion, I went to see a different doctor again, explaining to him in great detail the excruciating pain that had been consuming my body in the past week. I made him aware of every symptom.

‘It sounds