Patient Stories

Portacaths, wigs, cakes and cookies

2011-11-17T09:58:00.000-08:00

This is the third post by Nora Wright, who is blogging about her journey with breast cancer. Read her previous posts here, in which she describes how she first learned of her diagnosis.

***

Me and my husband

After all the attempts of trying to take blood, put in IVs and starting chemo, I got frustrated. I told my doctor I hated getting poked and prodded. Like my mother, I do not give up blood easily when it came to needles. It was suggested that I get a portacath put inside my chest to help with the IVs each week. This involves a small procedure whereby this little mechanism is placed under the skin and attached to the main vein. At first I was terrified of another procedure and I shied away from the idea, but if it would help me cope with the chemo treatments, then I would take one. This little mechanism ended up being a lifeline during each procedure and made the IV set up more manageable. No longer would I have so many bruises from the IV needles from taking blood.

It truly was a life saver and my mind was more at ease with each treatment. I believe it also helped the nurses as they attempted to find that one vein each week. I would laugh and cry at the same time as I said, "Good luck finding the vein this week!” Eventually everything sorted itself out with time and patience. Keeping a sense of humour and keeping one’s mind occupied was the key to being one step ahead of this treatment plan and disease. Appointments did not seem to be as scary after the portacath was put in and I didn't look as scary either! After each needle, I always showed a sense of gratitude to the nurse or technician even though I was hurting inside. Oddly enough I would thank the portacath each week for getting me one step closer to the final destination in the breast cancer journey.

After overcoming the fear of the needle and the blood tests, I was faced with the notion of losing my hair. I was never consumed with my looks, nor was I ever vain and I didn't wear much makeup, but my hair was one of my favourite assets. It was long, thin and brownish-reddish. It kept me warm in winter and was always up in a pony-tail in summer. The next few weeks were going to be challenging, but again a sense of humour was going to play a role. The nurses were able to tell me the exact week my hair was going to start falling out, and I began to prepare for that moment each week. I often wondered what was I going to look like and if it would hurt. I began watching patients in the waiting room and admiring how each one looked with or without hair. My estimations were harsh at first, but as I watched people passing by I realized they were beautiful. It reaffirmed that beauty was skin deep and no matter what, hair did not define a person. Maybe, just maybe, losing my hair was not going to be so bad... or was it.

Every Friday morning I received a call from my friends Linda and Vince. They both worked with me at my school and played an important role during my journey. Linda was a teacher in the school’s day care and Vince was our faithful custodian! Friday morning calls were the pick-me-ups to begin a weekend and the spark to end the week. They made me laugh and took my mind off my odd thoughts. One morning after a horrific episode in the shower the phone rang. I was a mess and inconsolable! In the blink of an eye, my hair started to fall out in clumps and just fell towards the drain. I was frightened, worried , scared and upset. Tears ran down my face and I had no words. I could hear voices at the end of the phone, but I was unable to speak.

"Nora......? Nora....? Nora, are you okay? What’s wrong?” was all I heard. My response was "My hair. My hair is all gone down the drain!”

Linda was calm and told me not to panic. She walked me through each step of removing the towel I had put around my hair hoping to keep it all in place. She gently reminded me that it was still me under the towel. She reminded me that I still had some of my hair and I was still Nora, her loving friend. I came back with the line: "Her loving, ugly friend!"

Me and my mom

She gently asked me to describe what I saw and for each negative I had about my looks, she came back with a positive. I was like that little child in my classroom whom I often redirected and consoled when things were not looking so bright, to gain confidence in the moment. I will never forget her kind words and direction in keeping me positive. She reminded me that looks are not everything, and that I would overcome this obstacle. She encouraged me to grow stronger, not to give up and to keep my faith. I realized at that moment I needed to surround myself with positive people who care about me, understand me, listen to me as I vented, yelled and screamed and still stand by me in my most vulnerable moments. Linda and Vince never left me and stood by me through it all. Their Friday morning phone calls gave me the courage to stand up and fight all the negative aspects of breast cancer.

After my hair started to fall out my friend Kerry reminded me that my benefits from work covered the cost of a wig. To be honest a wig never entered my mind at that point. I decided to go and check out my options and I brought my three best friends with me to help choose a wig or at least find something to cover my head. I had no ideas about wigs. I just believed that I needed someone who would be truthful about how I would look and someone with a sense of humour. Antonella was the truthful one, Carol was the one with the sense of humour, and David (my husband) had to look at me the most when I wore the wig so he came too. With an open mind and a sense of adventure, off we went to find that something that would ease the stress.

A consultation with the hairdresser was positive and real. She gave me some options and allowed me to discover and play for as long as we wanted. I gasped as we entered the room full of all kinds of wigs. Is this what was to become of me? I had a misconception of what a wig was for, who wore them and what they were like. Putting three teachers into a room full of wigs of all colours and lengths was a riot! We tried on all colours and tried to pick one. Carol put on every wig in the store and explained the style, texture and design in true "Vanna" manner. I laughed like I had never laughed before. She even put on a gray one and explained how she would look in the future. Looking at her, I told her she looked so much like her mother. Carol said it was good to know that I was losing my hair and not my sense of humour!

Antonella, myself and Carol

She proceeded to put each wig on me and described me at various stages of my life. We then had to get approval from Antonella and David. At the end of it all, David did not like me as a blond and Antonella didn't like it too short. I decided to cut my hair shorter and leave some room for more to fall out. Going from long hair to a fancy, short KD Lang style was difficult. When I looked in the mirror I thought I looked like a boy. I cried for a few minutes and asked Antonella, "What is going to become of me?” Her reply was, "Nothing, you are going to make it and you will be stronger for it." We chose a light brown wig that went down to my shoulders and we added bangs to cover the high forehead I was starting to gain. It was going to be the closest thing to the real me. I was transforming on the outside, but not on the inside. It was just hair, just a wig and just another day out with the girls and my husband.

I wore the wig on special occasions and when I went out in public at first. It gave me a sense of security and calmness about life. Gradually my hair fell out piece by piece, hitting the floor with a gentle tinkling sound. It was just like the Charlie Brown Christmas tree, the kind where the needles fell to the ground with a gentle touch. I can still hear the tingling sound to this day. So transforming from Nora to KD Lang to Gollum to Sinead O' Conner and Uncle Fester (Igor too) was the comic side of it all.

The positive side to all of this was that I didn't need to wash my hair or blow dry it everyday. I saved on shampoo and conditioner and I was ready to go out first and nobody had to wait for me to get ready. Unfortunately, hotflashes became more frequent and the heat of the wig was a killer. It became itchy, warm and very hot. The only time I really appreciated the wig was on a freezing cold night walking through Miniature Village in Whitby. Everyone was freezing and I was toasty warm! I did not wear it as much as time progressed. Hats, scarfs and caps were the trend. Many told me I had a nice shaped head and it was a shame to cover it up. It helped to have a mother who was able to knit hats to match the various colours of track pants. Accepting who I was and what I was becoming at various stages was the goal. Looking in the mirror and saying to myself “I'm still me” was half the battle. I had to find the courage to face the ordeal and find the ability to laugh through my many tears. The goal was to keep moving, find the good in it all and live.

So to accomplish these goals I decided to take a cake decorating class. This was absolutely hilarious! I never really paid much attention to the teacher when she was speaking or demonstrating techniques, as I found it difficult to focus on words. So I plowed through each week at my own pace and tried to figure out things on my own. What a riot this was, a real adventure! I burned cakes, made lopsided cakes and made icing that did not stick. On the positive side of things, I made birthday cakes for the family and my finale was a wedding cake that was three tiers high! This gave me a sense of accomplishment and confidence. The only problem I had was figuring out what to do with each cake I made. I brought them to neighbours, chemo nurses and the radiation nurses too. I could bake them, but I could not eat them.

Later I became interested in baking cookies. Again I burned some, forgot an ingredient or too and undercooked them. The house smelled good and it helped me to cope with everything. The cookies became a small way of thanking people for all their support and help through it all. It was important to find something you liked to do and do it, this way your mind did not wander into negative thoughts.

I realized the small things in life were more important than the big things. Having someone to help pick out a wig, phoning you on a daily or weekly basis, holding your hand when each chemo started, telling you a joke or just a smile meant the world. The question that often haunted me was "How will I ever repay them for what they did for me?” The answer in my mind was "never," but the cake and cookies were going to have to do for now as they were just a small token of my appreciation for all the little things people did for me.

I constantly had to remind myself that beauty lied skin deep and the outer shell was just temporary. Under the look of KD Lang or Uncle Fester was the same Nora willing to fight and live. The wig and the portacath were just temporary and were there to make things easier, just like friends and family were there to make things manageable. Cancer patients would be lost without the portacaths and wigs, we just have to keep reminding ourselves that they are there to help us along the way. Here's to them, three cheers!

Batter up!

2011-10-27T14:17:00.001-07:00

This is the third post by Nora Wright, who is blogging about her journey with breast cancer. Read her previous posts here, in which she describes how she first learned of her diagnosis.

***

After much deliberation and a very good cry, I really do not think I fully understood, the road that was to face me the following weeks ahead. I did not pay much attention to the internet with all its findings about breast cancer. I left that up to my husband, David. I did not understand much of it, because I was not able to soak it all in, nor did I really want to take it all in. I was facing eight treatments and four months worth of what I called torture (although I had many more ugly names for it). Again, it was scary to think of how the mind wandered and how various thoughts set the stage for each treatment. Chemotherapy!

As I sat in the waiting room for the first time, the noises of people coming and going were all around me. I met the male volunteer that morning. He greeted me with a big smile and a joke of the day and told me I was in the best possible place. This man greeted me each and every week with some kind of a "joke of the day" or various comic pictures about life as a cancer patient. He made the day's event seem much more bearable. He became an angel - the angel of laughter.

It was a struggle having blood tests every week. Finding veins, rubbing arms, heated blankets and kind words were what allowed me to get through all the blood tests. They reassured me that everything was going to be alright and it soon would be over. It was okay to cry when the needle hurt going in, because they understood. A smile, "I'm sorry" or just a kind word made the experience manageable. I heard the technicians being called "vampires" one day as I sat waiting for my turn to come. I thought it to be a very harsh title given to someone who probably had the hardest job in the hospital. They were to play a very important role in my journey and I respected them for what I regarded as a difficult job. They had all the power to help you escape the chemotherapy that I was to face each week. Funny, enough I never could escape them, but they always prepared me for the next step: the chemo lab.

As a kindergarten teacher, I regarded myself as someone with loads of patience. I could wait long periods of time for students to get dressed, print their name, or count to 100, but waiting to go in for my first chemotherapy seemed like forever. I did not say much just because I was full of fear. My mom held my hand for a very long time and kept the conversation going between myself and David. Again I just laughed or nodded as to what she was saying. There were all kinds of people around me waiting to go in for some kind of treatment or another. I wondered how did we all get here? And what was behind that door? Nurses called names one by one and each time I gasped at the thought my name would be next. I remember saying to my mom that I did not want to do this and that I was terrified. I told her I did not have the courage to face this unknown. Just as she was about to answer me an older lady sat down beside me and said hello. Little did I know that this woman would have such an impact on me in such a short period of time.

She struggled to sit down as she had a walker and she looked extremely tired. We exchanged smiles and she was very friendly and happy. Today was to be her last day of chemotherapy, she had fifteen visits and today was her last. She was 84 years young, lived on her own, had children and grandchildren and came from Mississauga with a driver from the Canadian Cancer Society. She was amazing! As she told her story, tears came down my eyes and I held my moms hand tighter. My mom was a few years older than her and I could not imagine my mom going through all of this treatment. Their generation could handle anything! As I held her hand, I asked to transfer some of her strength to me because I did not think I could handle my eight treatments let alone her fifteen. I told my mom through my tears that I had better smarten up and get myself together. Her story seemed so powerful and if she could make through all of this, then I better "batter up" and take one for the team!

My name was called shortly afterwards and I took a deep breath. As I walked toward the door, a rush of feelings came over me in a silent manner. A nurse asked how I was doing. I am sure she had seen many looks before and mine was probably no different, so with a quiver in my voice I told her I was doing okay. She was a warm nurse with a confident way about her, willing to give strength and encouragement where needed. She realized this was my first day and knew how I was feeling. She introduced herself as Chris and explained her role as a chemotherapy nurse. Her attention to detail was calming and caring, but the ugly thoughts still travelled through my head. Her pitch (to stick with the baseball analogy) enticed me to swing and loosen up as the introduction to the treatment began.

My cocktail was to be "ACT" and she described each drug and and how they worked. I looked at Chris and said I only wish this was an "ACT". She gave me a minute to soak in all the information and ask questions. When I was ready, she would come back in and prepare me for the treatment. She was the angel I needed at that particular time in my life where I needed hope, strength and faith. My thoughts were of heading to the electric chair, being punished for something I did wrong, and payback for the hurt I caused to any child on the first day of school. This first treatment was full of bad thoughts. How could something with so many side effects and so powerful as "ACT" be any good? I am going to lose my hair, get sick, vomit, get fat, and feel horrible for months? This can not be good!

In my mind Chris was my teacher on the first day of school or the pitcher in the championship game and it was the bottom of the ninth inning and the count was three and two! Chris heard me talk of all my fears and anxieties, as did my mom and my husband, David. As the needle went in and the chemo began to run through my body, a kind look came over Chris. She smiled and told me that it was going to get better. In my darkest moments Chris made me see the positive in what I believed a negative force. Like the young girl who was very afraid of leaving mom on the first day of school and trusted me enough to take my hand and show them the world of Kindergarten, I took hold of Chris' hand, trusted her and allowed her to guide me into the chemotherapy journey I so feared. Together with my mom, David, family, friends and nurses like Chris, I was taking Chris' pitch and hitting it out of the park.

We all cried that day, as day one of the treatments began. I had a fairly good idea of what was ahead of me, but I had to take it one day at a time. I knew I was not alone and the people around me were there to help make it easier. As the drugs settled in to do their job, I too settled in for the beginning of the journey. The chemo room was peaceful and overlooked the traffic in front of the hospital. The quiet space allowed me to retain my dignity and pride as I felt the most vulnerable. The first treatment called for some privacy and time to retreat. Later, I was able to share a room with many others getting treatments and the exchanging of stories were uplifting and inspiring. Each time there were fantastic chemo nurses like Chris who helped me get closer to the end of the treatments.

I remember my doctor coming into see how my first treatment was going and sharing a laugh about how well I looked. My puffy eyes and pale skin were some sight for sore eyes, but I felt very honoured that he would take the time out of his busy day to see how things were going. Thank goodness for primary care nurses too, they are the backbone to a positive journey. Never in a million years would I believe that a pharmacist could be so valuable and helpful like Ivan, from the pharmacy. Now if ever I could call some one a hero it was this man. In my darkest hour he was able to make all things better. Even thought I did not like his pills and his mixing of his many cocktails the team of pharmacists were helpful and caring. They were able to answer all my questions and explain what, when and how many pills to take. I believed I needed an assistant just to keep track of the pills and there were days where I did not want their pills. Even though I tried very hard to forget the pills and not pick them up, they managed to make their way to me every time.

I was very happy to have all these people on my team as I made my journey. Volunteers, technicians, nurses, doctor and pharmacists' were all instrumental in helping me to hit the ball out of the park. Without them I would have struck out and let the team down. Each week I got stronger as I stepped up to the plate and made my way through the journey. It was not always easy, but I had people around me who I knew would understand when I did not want to talk or were there when I wanted to vent. It was a range of different emotions each day. How to manage it all was a collaborative effort. So I came out swinging!

Each week I kept in mind the idea of "batter up"! I took some bravery, some wisdom and one deep breath. I just had to keep in mind that each week I was one swing away from the end of an eight treatment journey. "Smile, that is one more over." One more mile to go! Swing, batter, batter!

Moving forward, one step a time

2011-10-14T17:00:00.000-07:00

This is the second post by Nora Wright, who is blogging about her journey with breast cancer. Read her first post here, in which she describes how she first learned of her diagnosis.

***

Sitting at my desk in my kindergarten classroom, after completing report cards, interviews for next year's students and parents, and senior kindergarten graduation, I was completely overwhelmed and tired. I had accomplished another year of teaching and it was very memorable, as are all years. I sat looking at everything around me and thought, "Now what do I do? Where do I begin? How am I going to pack up this classroom?"

Somehow moving forward was not happening. Where was I going to store it all? I found myself staring at it all and frozen to the floor like a popsicle on a stick. My inner most thoughts asked "What did I do to deserve such a cross?" I put my head on my desk and cried. "Where am I going to end up and what is to become of me?" I thought. A little voice said, "You need to ask for help if you are to go forward!" Before I was up and out of my chair, a knock came to my door and there stood a friend and colleague, Joanne, with her words of encouragement and a helping hand. Her strength and kind words were just what I needed to inch me forward.

Her family arrived within minutes and we had the classroom packed in no time. Her enormous truck and her wonderful family made a difficult task more bearable. Closing the door of the classroom was extremely heartbreaking, as the sounds of children's laughter and antics were all packed into boxes heading for an unknown place. I felt like my life was being packed up and I too was headed to the unknown: the Odette Cancer Centre, at Sunnybrook Hospital.

My husband was away on business in the North West Territories for my introduction to the doctor and the hospital. So with my notebook in one hand and a capable listener and friend Antonella holding the other hand, I entered the Odette Cancer Centre. I was full of fear and anxiety. It seemed so large and busy with people going about appointments and visits to doctors. "Keep calm," I kept thinking but, inside, my brain was racing. We were greeted by a most friendly male volunteer with a smile that would light up the sky and a superb sense of humour. He directed me where I was to go to see the doctor. If everyone was like that volunteer then this was not going to be such a bad place. I kept reminding myself to breathe, move forward and keep positive.

As I sat in the chair waiting to go in, I observed people of all ages and types. Cancer did not discriminate and it has no favourites! I wondered how they coped when they walked through the doors to see their doctors? Did they move forward? One thing I did realize sitting there for a while, was they were not alone. Someone was always there willing to listen and lend a hand or for that manner a sympathetic ear.

The doctor came into the room and introduced himself to both me and Antonella. His smile, firm handshake and voice were comforting. I received a questionnaire with what seemed about millions of questions and the doctor spoke to my friend. While I was anxious, I realized he was putting her at ease first. Of course I had to find the humour in it all and said to her don't tell him everything. After listening to their conversation and hearing compassion and caring in his desire to learn the personal side of me from a friend's perspective, I knew he was going to help me get through this with humour and courage. Acceptance was the first step.

There was no big desk, no big words and no rush to tell me what was ahead of me. As I directed Antonella to take notes as to what he was saying, I was impressed as he gently told her to listen and he would write it all down for us both. I asked if I would be able to read his writing after he was finished. After all, I am a kindergarten teacher. I print!

After what seemed to be a long few minutes I really did have a clear understanding of what was ahead of me. I seemed to be calm and at ease with it all, until he got to the part of all the side effects. I asked myself "why did I have to ask such question?" As he listed them to me I slowly went into a state of shock. I heard nothing because I got lost at the words "hair loss" and "vomiting." As I cried after he mentioned fertility, he gently took my hand and apologized for mentioning the "F" word. My biggest fear hit me like a 2x4 in the head and I broke down. Not being able to have kids was heartbreaking. The question that lingered inside my mind was "How can I cope with all of this?" The answer: One day at a time.

After the discussion ended and all the questions were answered my Primary Care Nurse reassured me that everything was going to to alright. She showed me around the floor, the chemo lab and where to go when I came to the hospital. This made the journey easy to travel. What amazed me the most was the humourous question asked of me just before I left the building. The doctor came in and asked '"When is Yukon Bob coming home?" Yukon Bob, being my husband! I just laughed and asked "why?" He did not want to start treatment appointments until my husband arrived home from his business trip knowing I needed his support. He also mentioned that he may have some of his own questions and meeting with him before treatments may help with his journey. After hearing this I knew then and there, this was a good place with amazing people.

After I arrived home I gathered my team together to cope with all the appointments and the details of getting to and from the hospital. I purchased a booklet to keep track of appointments and I also bought a journal to write down all my feelings and the steps I took during the journey. I realized I was not alone at home or at the hospital and that people were there for me. I knew that I had a person I could talk to openly, a good listener, a realistic goal keeper and a positive thinker in my court. After my visit to the hospital and meeting my doctor and my nurse, my anxiety level was lowered and moving forward was going to be easier.

Inch by inch I moved forward. However small the steps were, I was going forward. I was still scared, I managed to find the courage to put my best foot forward. I resolved myself to accept this idea of having breast cancer, having to let go of a job I was going to miss terribly and accepting the help that I wasn't use to asking for. Looking at the big picture was frightening and did not allow me to go forward. After each appointment my brother would say, "There, that is one more appointment over and completed." This allowed me to keep going and know there was going to be a light at the end of it all. The challenge: keep going!

Let the journey begin

2011-09-29T11:15:00.000-07:00

Welcome to Patient Stories, a new blog series written by Sunnybrook patients. Our first blogger is Nora Wright, who will talk about her journey with breast cancer. In today's post, she explains how she was first diagnosed.

***

A journey is defined as "a passage or progress from one stage to another; to make a journey: to travel a distance." My journey/ passage began in December 2003. I was just married and I began a new teaching position in a new school early that September. Life was great and I looked forward to life's adventures with my husband and best friend. Little did I know my journey was going to turn for the worst on that busy June day.

Teaching kindergarten was rewarding and fulfilling for me. I worked hard and was always planning new things for my student to learn. My students were eager to live, laugh, and learn. Testing, report cards, kindergarten interviews for the following year and senior kindergarten graduation were on the horizon. I found myself in "end of the year mode": BUSY, BUSY, and MORE BUSY.

On a busy June day my journey was to take a different road. I was diagnosed with breast cancer. A range of emotions went through my head and heart. One being, "I don't have time for this right now" and I have a kindergarten year-end to accomplish. I remember asking my doctor's secretary if we could put all the tests and surgeries off for another three weeks or so. My priorities were my students and not me. I was of the belief that I could take a pill and be done with it. I was in a state of confusion and disbelief. I was not ready for all that was to face me and in one way, my way of coping with this was to keep going and deal with it at a later time. Crazy to think these thoughts, but it is crazy how the mind works in a time of crisis.

It was not until the end of the school day with a colleague did I realize that this was serious, really serious! I believed I was too young to have breast cancer and it was not real. This was going to be one journey I did not want to take or venture into and I was terrified, truly terrified. After many conversations with my husband and my mother I made many decisions about treatment and the accepting of the disease. I realized that this was my journey and my fate, and I had to make it my own and put my mark on things.

The breast cancer journey is different for everyone, men and women. No journey is the same from what I had the pleasure of experiencing. The journey has a variety of routes and like an adventure the route varies for all who are faced with the diagnosis. It is important to remember, you are important and in essence you have to come first. It took me a long time to do this because I had so much going on and I always had put my family life and my job ahead of me. Life certainly has a way of making you see things in a different manner. Suddenly, the little things in life that may not have mattered all of a sudden did.

On my first day of treatment, just before we left the house, and so began the journey!

I believe after you have been diagnosed with breast cancer you have to find your personal acceptance of it all physically, emotionally and mentally. Again it is different for everyone and how one chooses to fight the disease becomes personal. It was suggested to me, to do something that made me happy and to continue doing the things I liked to do. My doctor told me "to keep living and not to give up." I faced my challenges in smaller pictures, taking one day at a time and adding big doses of humour. I tried to see the positive in all that faced me, had my fair share of cries and dug deep within to laugh about a variety of things that may not have been so humourous. This made the journey not only easier to accept, but I made it my own.

As the saying goes: "It is not the destination, it is the journey."

Take ownership of this disease and fight it your way! Fight it with all you have and make the journey yours.