I was the youngest of five kids. My mother was a single parent. I was the peace keeper in our family. I tried to keep out of everyone's way. It was pretty chaotic.
|Me and my cousin an hour before surgery|
Wednesday May 1
I had some tests today. And my dad (Roger), my Auntie Lou and Junior came to visit (mom's always here). My dad brought me some comics, some gum and a chocolate bar. I share my room with Rochelle, she's really nice. Rochelle is 13 years old. When I was riding on the train there is a little room on top of the train and when I was sitting in that room I saw the CN tower close up!
This is a journal entry my mother wrote in hospital that day:
Friday May 3/85 - Mom's Notes
Tracy's ovarian cystectomy. Today I signed the forms for a full hysterectomy if necessary.
Tracy had a good night's sleep and was in good spirits when I got to her room at 9am. She was more lethargic than before, but told me she was hungry. She gave her roommate, Rochelle Johnston, some suckers and life savers from Auntie Deb. She has a bath at 10am and liquid Valium (red) at 11:40. She complains of backache and stomach ache. A teacher was in at 9:30am and Tracy started a letter to Allison after.
She was rolled out to surgery at noon.
Operation started at 12:35 - if all goes well, it will be over in an hour.
1:50: Still no word. Every time the phone rings I expect it's for me. The longer I wait, the more I fear there's trouble. I think of her as my little gift from God. She in His hands now - with the help of a good team of doctors. Pray God that this little girl will have many more years of health and happiness, this special angel.
Into recovery at 2:05pm for 2hrs (extended to 5 hrs)
Removed: Malignant tumour from right ovary and fallopian tube.
First details of operation:
- loss of 2 units of blood
- tumour not good - definitely not dermoid
- uncertain whether granular or not - it was badly hemorrhagic in on itself and had twisted into abdominal space - solid purple mass covered with cysts with some ruptured
- right ovary and fallopian tube removed
- other internal organs appeared intact and healthy
- extremely lengthy incision well above navel sutured with staples
- she went through it like a trooper
- tumour approximately the size of a football
- white blood count down due to hemorrhage
- pre-op weight 32.3kg (71.5lbs)
- after op 31kg (68.2lbs)
- tumour weight 2200gm or 2.2kg
- she was in the recovery room until 7pm due to slow recovery of kidney function.
|After surgery with all the flowers and gifts people sent.|
|Celebrating Mom & Dad's birthdays May 11th & 16th|
|Forcing a smile for the camera with my new Cabbage Patch Doll - a gift from my school.|
|At the airport sporting my new pixie hair cut.|
|A moment of bald headed bliss doing my Aunt's hair and make-up|
Toward the end of my treatment, I distinctly recall feeling isolated and alone. People stopped visiting. I was moved to a quiet ward and shared rooms with the sickest kids who died. Every week I lost a new friend in hospital. I was no longer allowed to go to school when I was home between treatments. I couldn't have friends over.
Another journal entry written by my mom:
Signs & Symptoms November 25-Dec2
Sunday - Anthony over, quiet day.
Monday - Woke at 4am crying, generalized "sharp" pain in abdomen. Call to doctors office & school re: chicken pox. Pain eases to a dull ache later in day. Nose blowing in AM - bloody. Temperature normal.
Tuesday - Bleeding nose in AM. Stomach ache gone. Tutor in AM, no activity beyond T.V. all day. No interest in homework. Started on embroidery instead. Good concentration and co-ordination. Dog sick.
Wednesday - Bleeding nose more frequent, denied by Tracy. Temperature slightly elevated above 37 degrees celcius. Tutor AM. Call to school re: chicken pox. Cheerful but minimal eating. Went shopping and took Sam to vet.
Thursday - Very tired. Doesn't want to get out of bed. Little to no appetite. Grey colour. Very weak with tutor. Temperature at noon 38.4 (home) at doctor 37.9. CBC, Platelet & Diff done at lab. Temp in evening 39.5. Some fluids taken - advice from Dr. Kerry (home). Blood results "bad". Upon my request called Dr. Odhiambo and was told (re: temp) "not to worry, happens all the time in these kids". Fever drops in night.
Friday - No better. Bleeding nose every 2-3 hours or more. Wakes with headache, persists. Fever 38 - Tylenol & Ethrocin. Barb's advice: Platelets minimal, WBC less than 1000 (home). Retest on Monday (no bruises). Tracy too weak to come to office and no request to see her by me. 4:30PM, phone Sick Kids and Dr. Greenberg suggested admission there: "Call Dr. Doyle on the 9th". Tracy too tired to go and me also.
Saturday - Both very tired and by Saturday night I was very tired.
Sunday - Tracy slightly better. Me - sick all day in bed. 6PM - I am extremely weak, headachey, nausea, etc. Ambulance called - me Code 4 (blue). Tracy ambulatory. My tests normal. Tracy's tests (CBC only, despite request for blood culture - Dr. Greenberg & IV fluids & antibiotics). Hemoglobin 69, Hematocrit 0.20, Platelets 34, WBC 1.4, Diff 0.07, Lymph 0.89, Mono 0.04. Both sent home.
I brought it up with her one day about 15 years later. She asked me, “Do you know why you and Claudio were always roomed together?” I didn’t know. She said, “Neither of you were responding to treatment, you were both put in isolation together because you were both expected to die that week. His mother and I decided that rather than spend another depressing night in the hospital, we were going to celebrate your lives."
Claudio died a few days later.
My alpha-fetoprotein levels were still high indicating ovarian cancer cells were still present. I had completed the trial. There was nothing more they could do. I just kept hanging on. The doctors were amazed. They told my mom to pray. I believed in God and I knew I had a team of angels watching over me (including my grandmother Ann Catherine and Saint Therese). I "felt" them, I even had moments when I saw them and I always talked to them.
After my final chemotherapy session, the nurses made me a big cake. I couldn't eat any of it of course, because I'd 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 was severely anemic. I couldn't fight off an infection and was at risk for internal bleeding. I looked beyond pale... I was grey.
Ten days later, I was still hanging on so they let my mother take me home (to die).
I slept in her water bed for three days in a cancer coma. My brothers and sisters had all moved away. Things had been so tense that year. I remember the day my sister left. She was really upset, packing everything she could into a suitcase. We shared a room, I sat on my bed watching her. I asked her where she was going and she told me she was leaving. I asked her why. It was her 16th birthday and no one remembered. I felt so awful.
My mom came 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 it would fog up. I looked like a tiny corpse. She called Sister Fredrika and Father Tait 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. We were so blessed to have her on call.
Mom was angry at God and the cruelty of taking away her youngest child in such a cruel way. She looked outside at her long neglected garden. It was the end of autumn, she decided to pull out the weeds and overgrown foliage. Gardening can be so therapeutic. She planned to pull out the rose bush my dad planted 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 every night. He planted it because I was their “Little Flower”. It had never produced any roses in 10 years.
I believe in the power of the mind. I believe that when our mind is strong, you can achieve absolutely anything. 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. All you have to do is think about the seed and that gives 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. I was determined. I still am. I can do anything I put my mind to.
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 still found 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. I have been there to comfort the families and I was there for them 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.
|Me and Dr. G in 2003|
"Live your life to it's absolute fullest, because you never know when it's going to end. And get life insurance."
This is one of the main reasons I moved to New Zealand - in search of a simple life. A life where it never snows yet I can go skiing at the mountain. Where I can grow food in my garden year round. I visualized this place when I was 16 but I called it Paradise. I didn't know about New Zealand then.
I took his advice (apart from Life Insurance) and here I am, living my life to it's fullest and experiencing everything I possibly can by saying YES to every opportunity that comes my way. 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 came to New Zealand with virtually nothing. I started my life all over again at the age of 30. It was a big decision but I don't have any regrets. I'm living my dream.
In 2007 my dream was tested when I discovered another growth on my remaining ovary. I had to make the difficult decision to have a radical hysterectomy at the age of 32. I contacted my specialists in Canada to ask their opinion. I was a New Zealand Resident but my support network were all in Canada. I was scared. One of the toughest things was the realization that I will never have children. Up until then I sort of "knew" but I had never fully accepted it. I still clung to hope... because of course I know that miracles happen.
I had to go through the grieving process. I cried for weeks. But having the surgery was the best decision. My ovary had been overworked and was never 100% healthy to begin with. I didn't realize how sick it was making me until it was removed. I instantly felt lighter. Once again reminding me just how blessed I was to have had natural hormones for 20 years.
I tried synthetic hormones for two years before realizing they were not good for me. I discontinued hormone replacement therapy. Gradually, over the next few years my body regulated itself. You can read that story and what early medical menopause feels like here.
The growth was a teratoma - similar to the one I had in childhood. This time we found it early. It was benign.
I've taken my health into my hands and I'm also dealing with the blood pressure naturally. You can read that amazing story here.
And now I will be climbing Mount Kilimanjaro in September 2013 representing New Zealand on an organized climb with Ovarian Cancer Canada for survivors and supporters. You can read about that here.
I will be creating a documentary about my life and finishing my book. What it was like growing up as a survivor of Ovarian Cancer and how it has affected me almost 30 years later. Kilimanjaro represents the mountain that every cancer patient faces when they are first diagnosed. That is why I said yes to the expedition. I didn't have an ending to the story... but now I will.
But I need support to get to the top. If you'd like to make a donation, you can pay by credit card on my Give-a-little account. Or if you'd like to make a cash donation please get in touch with me directly at email@example.com
There are many ways you can support me. You may have air points you'd like to donate, or you might be a supplier of trekking gear, or you might want to do a fundraising event. You may wish to sponsor the making of the documentary. Whatever you do, I will use your name or your company's name in the documentary. Anything is welcome. I will make a comprehensive list of things you can do to help and post it.
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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.