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Wednesday, March 13, 2013

My Story

When I was a child I always had a tummy ache.  By the time I was 10 they were severe.


They got progressively worse and they were particularly bad at night. I was a bed wetter.  I didn’t want to wake anyone up so I would quietly get up and lie on the end of my mom's water bed on my tummy which would soothe the pain.  Mom would wake up in the morning finding me at the end of her bed and think that I was lonely. 

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.

My mom took me to the doctor's office at least once a week.  I was hardly eating and I started struggling getting ready for school on time.  Our doctor dismissed my stomach pains as “growing pains” and indicated to my mother that she thought I had a school phobia and needed “more attention” at home.  I was labeled a “fussy eater” and she said my bed wetting was psychosomatic.  She never once felt my stomach.

My tummy was getting bigger and my sister told me to suck my gut in because I was getting fat.

One day in late April, 1985 I was in my classroom at school and I couldn't get out of my desk.  The rest of my 5th Grade class was lining up to go to gym and I was doubled over with pain.  My teacher, Mrs. Labelle phoned my mother who picked me up from school and took me straight to the doctor's office.  My regular doctor wasn't working that day so I saw her husband (also a doctor) who took one look at my swollen stomach and sent us to the emergency department.  He thought it was acute appendicitis.

By the time we got to the hospital, my pain had subsided and I wanted to get back to school.  I remember lying on a stretcher while the nurses rushed around.  A few nurses were whispering and looking over at me, which made me very uncomfortable.  I felt I had done something wrong.  I saw them speaking to my mother with concern.  My mom came over to me and asked me quietly, "You haven't been fooling around with any boys have you?"  I was incredibly embarrassed, they thought I was pregnant.

I was still pre-pubescent so there was no way I could be pregnant.  They took x-rays and found a large mass in my abdomen.  I was referred to Toronto's Hospital for Sick Children immediately.

We took the midnight train and arrived in Toronto at 6am.  It was a cold, rainy spring morning.  My mom wasn't a seasoned traveler and had never been to downtown Toronto, let alone Union Station.  We packed two heavy suitcases and two carry on bags because she was told we should be prepared to stay for a while.  To save money on a taxi fare mom said we could walk to the hospital from the train station.  She stopped to ask directions along the way.  It felt like an eternity.  I kept falling behind and crying, “Mom, my stomach hurts.”  The bags were heavy and I struggled to lift them.  My mom kept walking ahead saying, "Come on Tracy, it's just one more block".  She was trying to get us to the hospital for our appointment on time.  We walked two and a half kilometres.  If it wasn't for the rain, I would have given up and sat on the sidewalk waiting for mom to come back for me.  I lifted my bags and carried them every 10 steps and rested.  Wheels on suitcases were still a novelty in those days.  We had those old fashioned cases with broken handles tied together with string.

The queue at Sick Children's Hospital was out the door.  We lined up and waited our turn for admission.  Three hours later, I had my Sick Children’s Hospital armband secured around my wrist and I was an official “in patient”.
Me and my cousin an hour before surgery
I was admitted and sent for dozens of tests which I thought was incredibly fascinating.  The pain subsided and I was back to feeling normal.  The hospital was so nice and the nurses were even nicer.  They gave me stickers every time they took blood and they talked to ME... not just to my mother ABOUT me.  I felt valued for the first time in my life.  They thought I was adorable and funny and remarked to my mother that I was exceptionally bright for a 10 year old.  
Here's a journal entry I wrote while I was in hospital:
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!  
On May 3rd, 1985 I was booked in for surgery.  I had really nice surgeons,the young attending surgeon was Doctor Zultz.  I had an instant crush on him and labeled us the "Pepper-Zultz" team.   I wasn't scared before surgery.  I sensed the tension so I was extra bubbly and chirpy so everyone knew I was okay.  When they smiled, I smiled.  I told jokes with the doctors and nurses right up until the anesthetic kicked in.  As I drifted off they were laughing which was like music to my ears. 

My mother had a very different experience.  While I was being wheeled away to the operating theatre telling jokes, she wondered if that would be the last time she would see me.  Time passed by slowly.  She waited alone while other families waited in groups.  Each time the door opened, my mother hoped it was for her.  As news came for the other families, the waiting area cleared.  Nearly two hours later, she was the only one left in the room.  The doors opened and in came two surgeons, their gowns were speckled with blood.  Despite the fact that there was no one else in the waiting room, they took her to a quiet corner and sat down.  The head surgeon, Dr. Carroll told her that I pulled through it like a little trooper and I was in recovery.
 
We were dealing with a massive tumour and an aggressive cancer.  My mom asked, "How big are we talking?” Dr. Zultz threw his surgical cap on the table and said, "About that big.”  Dr. Zultz didn't have a small head.  The cap was the size of a football.  The tumour weighed 2.2kg (5lbs) and filled my entire abdominal cavity, pushing the other organs out of the way to make room.  It has twisted itself around organs and Dr. Carroll managed to save my left ovary and fallopian tube.  The tumor had originated in the right side.  It was advanced stage 3 which meant that the growth had spread, there were lesions on my liver and throughout my entire abdominal cavity and there were indications that it had already reached the lymph nodes.  The prognosis was not good.  There was a long silence.

My mother started asking questions about possible treatments.  Without treatment I would die.  If it hadn’t been discovered and removed I would have died within the week.  We were dealing with a virulent germ cell carcinoma called an Endodermal Sinus Tumour.  It starts as a dermoid growth in the ovary which forms hair, teeth, and other connective tissues.  I was born with the tumour and how it remained dormant for 10 years is in itself amazing.  At the time, this type of cancer was found in one out of one hundred thousand children.  In 1985 of the diagnosed cases, I was #20.  There had been no previous surviving cases.  It develops from primitive undifferentiated cells present in the third trimester of gestation.

Dr. Carroll gave my mother one option.  Since I wasn't likely to survive, she suggested I be used as part of a clinical trial to test chemotherapy drug combinations that had never been tested on humans.  The trials had recently been approved in Canada by the FDA and they could use me to find the right combination to save others diagnosed with this type of cancer.  Trialing the drugs increased my chance of survival by 30% but the side effects could be fatal.  The list of possible side effects were; kidney damage, lung damage, hearing loss, seizures, memory loss, liver damage, tremors, depression, severe learning disabilities, brain damage, heart failure, death.  Long term side effects were virtually unknown.  It was a long shot but in the very least my life could be used to help find the cure for other ovarian cancer patients.  She headed straight to the hospital library and buried herself in medical books.  The next day she donated my body to science.

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.
Meanwhile I didn’t really understand the magnitude of what was happening.  I am grateful that I was so young and naive to go through this ordeal.  I loved being in the hospital and other than the needles, it was the best place on earth as far as I was concerned.  I could eat as many Popsicles as I wanted!  I knew I was sick and I knew that I had cancer but I didn’t know that I was supposed to die.  There were lots of really sick kids all around me but I didn’t really ever think I was as sick as they were.  I got lots of cards and presents from my classmates.  I played in the playroom.  I made friends with all of the nurses.  I visited all the other sick kids on the ward.  I was a real social butterfly.  Of course I had proof that I deserved to be there - a long 8 inch incision slicing down my tummy starting 2 inches above my belly button which was stapled together.  Other than that, I still looked  normal.


Celebrating Mom & Dad's birthdays May 11th & 16th
Three weeks after my surgery they started my first round of chemotherapy.  I was to receive six doses of aggressive drug combinations which were to last for one week each session.  I was trialling Cisplatin, Bleomycin, Vinblastine and VP 16 (also called Etoposide).  They wanted to figure out which medications worked well together and which ones didn’t and what the side effects were.  Back in those days all chemo was administered through veins.  They put two long flexible needles in each hand and then my hands were strapped to boards so that the needles wouldn’t pull out.  I couldn’t use my hands throughout the treatment which lasted a week at a time.  It was torture.  Chemo was the worst thing on earth.  I could taste the poison the moment it entered my veins, it was like being filled with liquid metal.  

I don’t remember much about chemo after that.  The human mind is an amazing thing - especially the child’s mind.   It has the amazing ability to block out any bad experiences from the consciousness.  Most of what I remember are the good things.  My mind won’t let me recall most of the pain.  I will always remember the taste of chemo in my veins though, and the taste of fresh strawberries which my Grammy would bring.  If she fed it to me, my body didn't want to throw up. 

My mom told me stories of how I hallucinated on certain drug combinations.  One day she was resting her head on the side of my bed while I was in a deep sleep and I suddenly woke up and started shouting, “Cactus, cactus!” and pushed her off the bed.  Another time I was in a deep sleep and I suddenly sat straight up with my eyes open and started talking to people who weren’t there.  One of the drugs combinations I happened to be trialing that week was used to treat Schizophrenia.  I don’t remember these moments at all.  I just remember sleeping and throwing up a lot.  

Forcing a smile for the camera with my new Cabbage Patch Doll - a gift from my school.
I lost my hair after the first treatment.  My mom took me to a hair salon in Chinatown for a haircut before we returned home.  I had been in hospital for a month.  We thought that if I cut my long hair into a short pixie cut, it might not fall out as fast.  I didn’t have much time to enjoy my new look because about a week later it was falling out in clumps.  I would wake up every morning with piles of hair on my pillow and there would be hair all around my desk after school.  One day I wore a hat to school and I didn’t take it off.  One of the kids in my class pointed out to me that I forgot to take my hat off.  I told them that I was allowed to wear it.  They replied, "That's weird."

As I grew sicker, they didn’t know what to say to me.  They wrote me some beautiful cards while I was in hospital but they began to grow distant.  Some of the kids from the other classes teased me and I knew they were very curious to see my bald head.  In the school playground, a boy ran past me and grabbed the hat off my head, running away with it.  A group of others quickly gathered around, forming a circle with their backs to me to give me some privacy until someone got my hat back.  In tears, I went to see the school principal who apathetically told me it was bound to happen again so I should get used to it.  It's a real shame I was so embarrassed to show off my beautiful bald head.  It wasn't the done thing back in those days. 

Eventually, my friends stopped inviting me to their birthday parties and sleepovers because I was just too sick.  The popular girl in the school nicknamed me “The little walking cancer stick” which she thought was hilarious. I tried to keep good humour about it and didn’t let them know how much it hurt me.  I relied so much on my friends to make me feel accepted because I didn’t feel it at home by my siblings.  

All I wanted in the whole world was to feel "normal" so I acted 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 more than half the year, they didn't hold me back.  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 meant I wouldn't be allowed to go to school.  This is when I taught myself meditation.  I could do anything with my mind; stop nose bleeds and kill cancer cells.  It was like a mental Pac Man game. 


At the airport sporting my new pixie hair cut.

My tiny veins didn’t handle the treatments very well.  After my second round of chemo, the veins in my hands and arms collapsed.  They tried using the veins in my feet.  I kicked and screamed until they gave up.  I hated those long IV needles and I still feel physically sick when I think about them.  They used every vein they could find - and each one eventually collapsed.  Eventually the chemotherapy would leave permanent burn marks on my arms which look like dark streaks over my veins.

They were trialing a new product called an “Infuse-a-port” which is now standard for chemo administration.  They call them"shunts" or "porta-cath" (portable catheter) or "port" for short.   I was one of the first lucky recipients of this revolutionary invention.  The objective of this little gadget was that it was surgically inserted in the chest under the collarbone so that the chemotherapy drugs could be directly fed into the jugular vein.  The nerves were scraped away from around the shunt to minimize pain.  Only one needle was needed, inserted into the spongy pad under the skin.  I felt the rush of the cold drugs entering my body and the familiar taste of metal.  It was a strange sensation.  They were also able to draw blood from the shunt as well.  This meant my hands and arms were finally free.  I could write and draw and sew and make things for my friends while I was on chemo, when I wasn’t sleeping or being sick.

Unfortunately because it was experimental, there were glitches in the way it was designed.  Nerves regenerate faster than they realized, at least mine did.  After my first treatment using the shunt, it was incredibly painful.  It was a frustrating result.  I wasn’t sure which I hated more, the IV needles or the infuse-a-port.  Today they insert the shunt lower under the fattier part of the chest rather than the thin area under the collar bone where I had mine.

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.


A moment of bald headed bliss doing my Aunt's hair and make-up
I listened very closely to my Oncologists instructions about medication administration.  I knew that when we got home from our hospital visits my mother would be too drunk to look after me.  I hid the fact that she was drinking in the hospital because I was so embarrassed.  When she passed out in the cot beside my bed she snored really loud.  I’d throw my stuffed animals at her so she didn’t disturb the other kids and their parents.  Sometimes I’d have to get out of bed, attached to all the tubes and machines and shake her until she turned over.

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.
It took me years to forgive my mom for her drinking.  One particular night stood out in my mind.  I was sharing a ward with a 14 year old Italian boy who was very sick.  His mother didn't speak much English and she was always crying.  She and my mom became friends.  One night they snuck wine, liverwurst and crackers into our room and had a little party.   They both got drunk and I was absolutely furious.  Didn't they realize what the smell of liverwurst does to a kid on chemo?  I was always very conscious of the other kids and how they felt.  Claudio needed his sleep and they had to keep it down.

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." 

I never knew.  No one told me I was supposed to die.  My mom felt just as alone as I did.  She was coping the only way she could.  She had so much on her plate and she had no one there supporting her.  She did her best to hold it together.  
  
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. 

What happens next still sends Goosebumps through my body.  

My mom went around to the front of the house where the rose bush was planted under my bedroom window.  On it was a single, perfect pink rose.  She knew it was a sign.

My mom cut the rose and put it beside my bed.  As she was leaving the room I woke up and asked her, “Mom, am I going to die?”  She evaded the question by asking, "Are you hungry?"   I was starving.  I requested my favourite meal – Broccoli and Rice.  I can still remember how good it tasted.  Funny how I remember that.  I started to get better after that.

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
In the summer of 2003, I had had a heart to heart talk with my childhood Oncologist, Dr. Greenberg, after being diagnosed with Essential Hypertension.  I was having inexplicable malignant flare ups (BP was 210/170) which scared me. Tests showed that my organs were functioning like someone in their 50's.  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." 

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 tracypepper@yahoo.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.

Thank you for taking the time to read my story.  Please share it.  Click on the facebook link or share it on twitter.

You can follow my journey to Kilimanjaro and beyond on facebook at:
https://www.facebook.com/tracypepper.expeditionofhope

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.

3 comments:

Anonymous said...

Amazing story Tracy! Some aspects sting a little more than others, as my 15 year old daughter has cancer close to the same place as yours. The radiation has stunted the growth of her uterus and her ovaries, as of now, have shut down. We pray that they wake up some day as she wants children so badly but will never be able to carry her own child. I can relate to your mom and her drinking, as a caregiver. The burden that a cancer parent carries is one nobody should ever carry. Good luck on your personal journey. Cherri

Tracy Pepper said...

Hi Cherri, thanks for taking the time to read my story and for sharing a little about yours. I hope your daughter is doing well today. As for the future, it's important to live life in whatever way it comes and not focus on the things we don't have. Sometimes they are blessings in disguise. We all have a purpose. I've often said, being a caregiver is the toughest job of all. You're expected to be strong when everything is out of control. I'm sure the subject of drinking is so taboo and covered over but it's very real. So thank you for your openness. I would love to be at the OMG this year but I've got my own summit to climb first! Hope you both have a wonderful time. xo

Anonymous said...

Hi Tracy, I read your amazing story and regret that we as neighbours ( 4880 Morrie Court) were unaware of what you and your family were going through. We could have been of some support to you.
I admire you for your courage and determination.good luck on your expedition and I want to hear all about your New Zealand life when I visit that country in November to see my daughter and her family who now live in Auckland. How far is your centre from there?
Best of luck
Kathy Allen (swisskate57@hotmail.com)