My life leading up to that day was fairly ordinary. I was the youngest of five children in a family that was pretty self absorbed. My mom raised us all solo. I only saw my dad once a year when he was passing through to see his mates and occasionally if there was time, he'd take me out for breakfast at a dingy old diner where we'd have greasy fried eggs and chips. My dad was my hero despite how little I saw him. I had a free and easy childhood with very few rules or boundaries. I was virtually invisible. I could do what I wanted. I came and went as I pleased. No one seemed to notice if I wasn't around. I never got asked where I was or who I was with. I had an open curfew from quite a young age.
Then on May 3rd, life changed forever. I went from being invisible, thrust into the spotlight. I'll never forget that day or the 18 months that followed.
I had been suffering from stomach pains for years which had progressively gotten worse. They were particularly bad at night, waking me up. I was also a bed wetter. I didn't want to trouble anyone by waking them so I'd quietly sneak into my mom's room and lie at the end of her water bed on my tummy. The warmth of the water bed soothed my pain. I tried hard not to wet my mom's bed but it was almost impossible. I struggled to eat breakfast, I felt sick and I felt full,. My mom took me to the doctor a lot, at least 3 times a month, but the doctor said I had growing pains and a school phobia, which didn't make any sense because I absolutely loved school. She said bed wetting was a sign I needed more attention. My doctor never palpated my abdomen. This went on for months.
On May 1st I was in school doubled over with pain. As the class lined up to go to gym, I couldn't get out of my seat, the pain in my stomach was so intense. My teacher, Mrs. Labelle rang my mother. We went straight to the doctor who happened to be away that day so we saw another doctor. He thought it might be appendicitis and told us to go straight to the hospital.
The pain was intermittent so one moment I'd be doubled over, the next I'd feel fine. My stomach was so distended, I looked pregnant. I felt guilty but I didn't know why. I heard the nurses whispering and called my mother over to ask a few questions before sending me in for an x-ray. The way they looked at me made me think I had done something bad. I wanted to cry. No one knew about the older neighbourhood boys who forced me to do naughty things to them when I was a little girl. My mom asked me if I had been fooling around with any little boys. I was horrified! I was pre-pubescent and I didn't have a clue how babies were made.
X-rays showed a large mass in my abdomen. That night my mother and I took the overnight train from my hometown of Hanmer, Ontario to Toronto where I would be admitted to the Hospital for Sick Children for immediate surgery. It was a 6 hour journey one way.
|Me and my cousin Karin an hour before surgery|
We arrived in Toronto in the wee hours of the morning, it was pouring down with rain. My mother was advised to pack for a reasonable period of time so we had 4 big bags (back in the day before wheels on suitcases). My mother knew very little about Toronto, much less about how to catch a cab. She asked someone to point us in the right direction and we walked from Union Station to Sick Children's Hospital. It was a very long walk and my tummy really started to hurt. I had to walk a few steps, put the bags down to rest. I started to cry and told my mom I wanted to stop. She just kept walking saying, "It's just one more block." We were both exhausted.
There was queue of families lined up out the admission entrance. It was fascinating to watch all these sick kids. I felt very privileged to be there. A few hours later, I was in a meeting with my team of surgeons. They all talked about stuff I didn't understand and arrangements were made that I'd be prepped for surgery early the next morning - on May 3rd, 1985. I didn't fully understand what was happening but I definitely felt important because for the first time adults were talking directly to me and being super nice.
I went into surgery feeling euphoric - my first hit of laughing gas. My attending surgeon's name was Dr. Zultz. He was young, handsome and funny. I thought we were the perfect team - Pepper & Zultz. As the anesthesiologist started to put me under I remember telling jokes and had all the doctors and nurses laughing.
|After surgery with all the flowers and gifts people sent to me in hospital.|
A series of questions were asked... what type of cancer? What is the prognosis? It was all very vague at that stage. I had stage 3 ovarian cancer. I was born with it - it was a very rare germ cell tumour also known as a yolk sac carcinoma or an "endo dermal sinus tumour". Something didn't develop properly while I was in utero and I had an ovarian dermoid cyst which left undiagnosed developed into cancer. This type of cancer develops in the egg producing cells of the ovary. The rareness of the type of cancer meant that the diagnosis was poor. At the time, there were only 19 diagnosed cases (I was the 20th) and no survivors. I was not expected to survive the week.
|Clowns visited and painted my face.|
I was in the surgical recovery ward. I loved that place. I was so happy in there, eating popsicles and doing crafts. I still had no idea how sick I was and for that reason I didn't really act sick. I felt better than I had in years.
|Forcing a smile for the camera with my new Cabbage Patch Doll - a gift from my school.|
|At the airport ready to get back to school to see my friends.|
It wasn't long before my hair started to fall out. There would be piles of hair around my desk at the end of the day and I'd wake up in the morning with clumps of hair on my pillow. One day I went to school with a little page cap and didn't take it off. That was weird and the kids couldn't understand why I was allowed to wear a hat in class. Suddenly, I became invisible. They just didn't know what to say, so they acted like I wasn't there. If I wasn't invisible, I was teased. Those were tough times. All I wanted in the whole world was to feel "normal" with my friends. I would act as normal as possible. I participated in sports when I could. I went to school whenever I could. I did my homework and kept up my grades. I didn't slip in my studies and although I missed almost half the year, they didn't hold me back. I certainly didn't act sick. Cancer was a huge inconvenience so I pretended it wasn't there. I used to get frequent nose bleeds which I would deny and hide from my mom. I knew nose bleeds weren't a good sign and I wouldn't be allowed to go to school. So I dealt with them in my own way. This is when I taught myself meditation. I could do anything with my mind... include kill cancer cells. It was like a mental Pac Man game.
After my second chemo, the veins in my arms and hands collapsed. They tried any vein they could find but I fought them off. I was pretty feisty. I could not stand the thought of needles in my feet. My little body couldn't handle the strength of the chemo. It left burn marks up my arms from where it literally fried my skin. I can still remember the metallic taste as the drugs entered my body. I was selected to be the first recipient of a new gadget called an "infuse-a-port" which would forever change the way chemotherapy is administered. The gadget is inserted under the collarbone on the front of the chest through a minor surgical operation. It feeds the chemotherapy directly into the jugular and carotid artery and the best part about it - only a single needle for all chemos! My arms were free and that made the world of difference. The infuse-a-port (now known as a port-a-cath) wasn't supposed to hurt but it did. They scraped the nerves away from under the skin but my nerves regenerated quickly. This was also all in the name of science experimentation. They did things differently after that. My scar is higher under the collar bone than those after me. There wasn't much fatty tissue there which might explain the sensitivity. Now they install the port-a-cath lower in the chest.
I was to receive six cycles of chemo, with each cycle lasting a week. I'd be given a rest between cycles for 3-4 weeks where I would travel back home and try to resume a normal life. Occasionally we'd fly down to Toronto for my course of chemo, only to be sent home because my blood counts were too low and it would be too risky having treatment. This dragged my chemo out over 18 months.
Toward the end of my treatment, I distinctly recall feeling isolated and alone. People stopped visiting while I was on treatment. I was moved to a quiet ward and shared rooms with the sickest kids kids who died. Every week I lost a new friend. I was no longer allowed to go to school when I was home between treatments. I couldn't have friends over... not that my friends wanted to sleep over anymore anyway. I was bald, skinny, grumpy, sick and I slept a lot. It wasn't fun and I wasn't all that pleasant to be around I was told. There was no such thing as organizations like "Make a Wish Foundation" in those days. My siblings got absolutely no support and that wasn't easy on them. Our family was crumbling and I felt guilty about it. My mom was never home and they were all expected to look after themselves. It's no wonder they resented me. Every time we'd go to hospital, they'd wonder if I'd come home. They just wanted life to return to some kind of normal. This affected my mom as well. She had very little support at that time, so she turned to alcohol for comfort.
|Between chemos, spending time at my Grandparents in London doing my Aunt's hair and make up.|
I had my last chemotherapy treatment at Sick Children's Hospital in November 1986. The nurses made me a big cake - which seemed odd, I couldn't eat any of it because it would make me throw up. It was their way of saying good-bye. There were a lot of tears that day. I didn't want to leave. I was going to miss that place. I felt more at home there than anywhere.
I was discharged from Sick Kids but was admitted straight into Laurentien Hospital in Sudbury. I had no platelets, zero white blood cells and suffered severe anemia. I couldn't fight off an infection and if I was knocked I could bleed to death. I looked beyond pale... I was grey. Ten days later, they sent me home (to die).
I slept in my mother's water bed for three days in a cancer coma. My brothers and sisters had all moved out of home. My mom would come in to check on me just to make sure I was still alive. My breathing was so shallow that she'd have to hold a mirror under my nose to see if my breath would fog it up. She said I looked like a corpse. She called Sister Fredrika and Father Tait over to give me a final blessing. They lived in the house across the road. Sister Fredrika was called on a lot that year, often in the middle of the night when I was having some sort of reaction.
My mom decided to get into the garden to do some therapeutic weeding. She was angry, frustrated, sad and felt all alone. She was so angry at God for turning his back on us. As she ripped out the flowers and prepared the beds for winter, she thought of the rose bush that my dad planted under my bedroom window the year I was born. I was named after Saint Therese - the little flower - who sent roses from heaven. I wore her pendent around my neck and I prayed to her all the time. The rose bush had never flowered, my mother decided it was time to take it out.
When she walked to the front of the house where the bush was planted, there was one single rose blooming. She knew instantly it was the sign she was waiting for. It gave her an immediate sense of peace. She cut the rose from the bush and placed it on my bedside table. I opened my eyes and was feeling very hungry. I asked mom if she would make me my favourite - broccoli and rice. As she walked out I asked her curiously, "Mom, am I going to die?" She simply said, "No." From there, I started getting better.
I believe in the power of the mind. I believe that when our mind is strong, you can achieve absolutely anything. I believed anything my mother told me, so if she said I wasn't going to die, then I wasn't going to die. That was that. I was sick and tired of being sick and tired so I ate my broccoli and rice and I started getting back to normal. I was itching to get to school and grow some hair!
I am often asked whether people should hide the "truth" from children. What is the truth? Who says that dying is the truth for any cancer patient? I believe that suggesting death is planting a toxic seed in the mind. Once that seed has been planted, there is a very good chance it will grow. Of course, it depends on the fertility of the soil and on how much water it's given. Without encouragement of growth, that seed can just shrivel and die but it's risky. All you have to do is think about the seed and it's giving it life. In my case, my mother chose not to sow the seed at all. I'm incredibly grateful for that. I didn't have to try to avoid negative thoughts about dying because I had no idea it was an option.
The doctors say it's a miracle. There's no scientific answer. When I had a biopsy, my body showed absolutely no sign of cancer. The surgeon told my mother that if she had not done the initial surgery, she would never believe I was the same child.
I'm humbled by my experience and I try to give back as much as possible because I know that my life is a gift and I mustn't waste it. I paved the way for Ovarian Cancer. The chemotherapy combinations I trialed are now used worldwide to cure women and children from the disease. Ovarian cancer is becoming more common - likely due to the effects of pollution and chemicals in our environment. Endodermal sinus tumours are the most common type of ovarian cancer in children today - but now the prognosis is good. They know which drugs work. Ovarian Cancer is the most fatal women’s cancer, there is no screening test for the disease. Signs and symptoms can be vague and often ovarian cancer is detected in late stages leading to survival rates of less that 30%. Yet, when found and treated early, survival rates increase to 90%.
This experience has enriched my life so much and allowed me to mentor many young people who were dying from cancer themselves... like Krista who died in 1992 and Sally who died this past February. I was there to comfort their families and I was with the girls right through to their deaths. I got to know hundreds of others through camps like Camp Oochigeas and CanTeen. If that's not what it's all about, then I don't know what is.
When I work with these kids I am reminded of how lucky I am to be alive, and not just alive but virtually unscathed. So many kids and young adults I've met have disabilities from the result of their chemo, hearing loss, severe depression and learning disabilities are all very common. I can't have children but that just means I'm able to give my time to hundreds of them. I was diagnosed with high blood pressure in my mid twenties. The tests showed that my organs were functioning like someone in their 50's. I've lived much longer than they expected. I am grateful for the life I have, in whatever state it comes. I look after myself by eating well, exercising and avoiding stress. This is one of the main reasons I moved to New Zealand - in search of a simple life. Earlier that same year, in the summer of 2003, I had had a heart to heart talk with my childhood Oncologist after being diagnosed with Essential Hypertension. I was having inexplicable malignant flare ups (BP was 210/170) which scared me to death. He will always be the man who saved my life, he's like a father to me. I'll never forget what he said. "Live your life to it's absolute fullest, because you never know when it's going to end. And get life insurance."
I took his advice and here I am, living my life to it's fullest and experiencing everything I possibly can by saying YES to everything that presents itself. I walked away from a life of material possessions, where you measure your success by the things you have, not by the life you live or the sort of person you are. I wasn't a happy person in Canada. I had everything I possibly wanted, I was spoiled and it was evident. I was moody and bitchy and very restless. I wanted out of that cycle. I knew I needed to change, so I did. I came to New Zealand with virtually nothing but an old sick cat (who got diabetes shortly after we arrived). I started my life all over again at the age of 30. It wasn't easy but I have no regrets. I am so blessed to be here and live the kind of life I get to live. I live in my happy bubble.
I managed to sort out my blood pressure. You can read that amazing story here.
I will continue to provide support and offer words of hope. If anyone is out there reading this knows where I might be needed or an organization who needs a guest/motivational speaker, please don't hesitate to contact me. It's my life's mission to bring a message of hope when someone has been told there's none.