3 years, 1095 days, 36 months, 26,280 hours

You catch the drift that it's been quite a long journey for me so far.

I am typing this post on my parent's back deck in the sun after being at the hospital since 8:30 this morning.

Let me rewind a little bit... I had my CT scan after I had completed the 12 cycles of chemo.  I was hoping to start the maintenance chemo regime.  Well, that isn't going to happen.  The tumour in my pelvis has remained stable, but I have new tumours in the lining of my left lung, one is sitting on my heart.  I had been OK'd in November when I met with the oncologists there and so now my oncologist contacted Halifax when she saw the results of my scan, assuming that was the next step I wanted to take.  I will write about the entire clinical trial process in a separate blog post soon as it is so confusing I honestly don't know how to put it in words yet to enable you to understand.

Anyway, I have been approved for the clinical trial (with major hiccups and a 7 week wait to see the oncologist and clinical trial coordinator in Halifax).  I am moving, indefinitely on Wednesday to be able to do the trial.  I had all of my baseline tests and scans yesterday and today.  If all is OK, then I will start the drug (a pill) on Thursday.  Again, I will go into more detail later.

Today I wanted to share the speech I gave a couple of weeks ago at my old high school in front of hundreds of girls.  It was an evening designed to empower and inspire young girls with various activities and speakers at the end.

Tomorrow will be my 3 year Cancer-versary.  I can hardly comprehend all that has gone on in my life in the past 3 years.  All of the tests, scans, pills, chemo, sleepless nights, the PAIN.  It is all a blur.  When I first started chemo it was a whole new world, and now with this clinical trial, it is a whole new world.

I did get to labour and delivery today in time to meet of my best friends' of 20 years new little daughter (her second).  Those are the moments that life is about.  The next newborn I hold will be my nephew!

So, after all that mumble jumble... here is the speech I gave (and no I haven't changed it and how it is written was for my reading purposes so excuse the bad grammar).

What would you do if you blinked and all of a sudden you were in a foreign country and you didn’t know the language or anything about the culture?  Life as you knew it, would be no more.   Everything you had worked so hard for your entire life was no longer important. You immediately had a new set of priorities.

This is what happened to me on May 17, 2011, when my whole world turned upside down.

I am currently fighting my biggest battle yet: CANCER.

In January 2011, I woke up in the middle of the night with excruciating pain shooting down my right leg.  I drove myself to the emergency room around 2:30 am.  I was in great physical shape, probably the best shape of my life.  At 24, I was frightened.  I knew something was not right somewhere inside my body.

From January until April of that year, I experienced atrocious pain in my lower back and the sciatica never improved.  The pain was not constant at this time, and by the time I got into my doctor’s office it was usually after the pain had subsided.   I was not taken seriously at the ER. I was an extremely healthy, active 24 year old young woman.  After seeing the same doctors several times in the ER I demanded an MRI.  I felt I was in tune with my body and knew there was something very wrong.   

My MRI was booked for the fall.  In preparation for this, my family doctor ordered routine xrays.  The pain persisted and worsened.  Some days, I couldn’t get out of bed.  I continued to work, despite some days being in excruciating pain.

I received my MRI appointment for the end of April.  I was prescribed 9 different pain medications in those 4 months.  The strongest painkiller I was prescribed was a small dose of morphine, which did nothing but make me feel sick.  I was shocked that my MRI was so soon.   I later discovered that my family doctor had rushed my MRI after having seen the X-ray of my back he had requested.  My doctor saw that one of my spinal discs sits a little bit over another.  Typically, this shouldn’t have caused any pain so he was surprised that I had been experiencing such severe pain.

I happened to be in the doctor’s office the morning the hospital called with my MRI results.  The doctor left the room to take a phone call; I had no idea it was about me.  He returned about 10 minutes later and told me that it was the radiology department on the phone and they had my MRI results.  They didn’t know what they were looking at.  I was told I had to go to the hospital immediately, as they were waiting to send me for an emergency cat scan. 

The following morning my mom drove from Moncton to Fredericton to be with me as we met with my family doctor to hear the results of these scans.  I had a mass on my sacrum.   How big? I asked.  The doctor said it was about the size of a tangerine.

I immediately left the doctor’s office, packed a bag, drove to my work to tell them I was leaving and wasn’t sure what was going on or when I would be back. 

I was in Halifax 5 days later for a bone biopsy of my sacrum.  5 days after that I was diagnosed with Ewing’s Sarcoma, a rare form of cancer that can originate in soft tissue or bone.  Two days later I was watching chemo go through an IV and into my veins.  It was an out of body experience.  All of my body systems went crazy.

In total, I spent 10 days in hospital in Halifax.  Before I had made it to Halifax, the pain had taken a turn for the worse and I experienced chronic, excruciating, never ending nerve pain for MONTHS.  I spent the next 3 months after I was home from Halifax at my parents’ house in Moncton lying on the couch on the left side of my body.  I was told that I should start to feel some relief in a couple of weeks once the chemo had started to do its job but relief didn’t come for another 2 and a half months.

During that time I lay on the left side of my body for 24 hours a day 7 days a week.  I could not sit.  I could not stand.  Gravity was my enemy, along with the cancer.  Any time I would try to sit up, I would experience pain.   Simple daily tasks like getting to the washroom proved to be extremely challenging.  My parents were there to help me with my every move.  I relied on them to help me crawl to the washroom and sit a certain way to relieve the pain of the tumor while in the seated on the toilet.  Life as I knew it was no longer.

Once I was discharged from Halifax I returned to my parents’ house in Moncton.  I ended up moving back home with them for my treatments.  I was scheduled to have 8 cycles of chemo altogether.  I am very fortunate to have not had any side effects from the chemo.  My hair fell out and I gained weight from the steroids they were giving me.  Otherwise, I flew through the chemo, despite the long 12 hour days, 5 days a week, every 3 weeks.

The plan was to have surgery after my chemo was completed to clean up the bone.  I was told that my cancer was “imminently treatable”.  In other words, very treatable.  After 6 months of chemo, I had an MRI to see what magic the chemo did.  The tumor was gone.  All of it.  I was SO relieved.  But, once the doctor’s saw what the bone looked like that was hiding behind my tumor, they told me surgery was no longer an option. The cancer had eaten away at the bone in my sacrum that it wasn’t possible to perform surgery.  There are too many nerves involved in the area.  It is one of the hardest places in your body to access.  The doctor told me I should meet with a Radiation Oncologist in Moncton.  I was adamant about never getting radiation.  I had heard horror stories and didn’t want any of the nasty side effects I had caught wind of: burning, red, inflamed skin, diarrhea, nausea, etc. 

I met with my radiation oncologist in November of 2011.  She was so nice, approachable, honest, and very kind. Her words to me were “You have one chance to beat this, and your time is now”.  I started my 30 radiation treatments, one a day, Monday to Friday, about 10 days before Christmas.

I was 24 years old and always wanted to have a family some day.  I met with a gynecologist who performed an ovarian transposition on me.  Using small tools and a small camera he inserted through my bellybutton, he moved my left ovary up higher, away from the radiations path (hopefully), and my right ovary he stretched across to the other side and pinned it up with my left one. 

I was fortunate again, and didn’t experience any side effects with radiation. 

In February of 2012, I had another MRI to see how everything in my pelvis looked after my 30 treatments.  A location in my abdomen had lit up during the scan and I was referred to a surgeon in Halifax, I underwent major abdominal surgery that October to attempt to find and remove a spot in my abdomen that the doctors were concerned about.  Did I mention that my original surgery was scheduled for early that summer, but my OR booking card was never sent on and only with my parents’ persistence was this even discovered.

When the results came back from the lymph nodes the surgeon had extracted, she told me I should take it all as good news that nothing was found and to carry on with my then considered “cancer free” life.  That is exactly what I did.  I went back to work in December, I played indoor soccer that winter, went back to the gym, and in April I travelled to Calgary to meet my newborn niece.

Life was looking up.  In the shadows of this normal life I was now able to live, there hid a constant fear every 3 months when it was check up time.  I would breathe a HUGE sigh of relief when I was told it was all clear.

So- what kept me going during this 1.5 year battle? I created a blog so I could vent, and share my journey with others.  My family and friends have been incredible.  Yes, I have lost some very good friends but I have also made new, strong, friendships.   I have taught myself how to knit, read a lot, and once I could walk again I started to walk my dog whom my parents had gotten me just after I was diagnosed.  Bentley has been my sidekick throughout the past 3 years.  I became a vegetarian when I was diagnosed in 2011 to try to be healthier.  Once I watched the documentary “Forks over Knives” I never ate meat, or drank milk again.  I believe it is important to know what you are fueling your body with.

In late April of last year, I arrived back home to New Brunswick, on Cloud 9 after meeting my first and only niece.  I returned to work and about 2 weeks later received a call from my family doctor and he wanted to see me immediately.  That day happened to be the day before my next check up meeting with my Radiation Oncologist.  He suggested I bring an extra set of ears of 2.  I dropped my phone. 

I went to my parents house where my sister and 3 month old niece were, who had just moved home from Calgary 3 days prior.  By noon that day I knew it was back, but I didn’t find out just how badly until the next day.

The radiation oncologist came in and said she was so sorry… the cancer was back.  It was in the bone and a new tumor was present.  The new tumor was in the same location as the first tumor, and roughly the same size.  She didn’t stop there, she told me it was in my lungs. In my mind all of these alarms are going off.  Lung equals game over.  That’s what we hear all of the time.  She didn’t stop there either.  The cancer had metastasized; spread, to my lungs, the cavity between my lungs, and lymph nodes in my abdomen.

I almost fell off of the exam bed.  I was sobbing and screaming.  I felt so helpless and hopeless at the same time.  I was scheduled to start chemo again in Fredericton.

The time between knowing my cancer was back, and not yet knowing how badly, was spent in excruciating pain.  I ended up in the emergency room in a pain crisis, and was admitted for a few days until the pain was under control.  I was taking 48mgs of long-acting Dilaudid a day, which is 7 times stronger than morphine. I was started on a brand new chemo protocol out of Poland.  I was scheduled to have 6 cycles.  In October 2013, the results from a CT check up revealed that the tumor had not changed in size. This was not what we were hoping to hear.

We didn’t know what my options were and considering how rare Ewing’s is, we wanted to know what the experts in Toronto had to say.  In November, my parents and I flew to Toronto and met with one of the top oncologists in North America who specialize in Sarcomas. The oncologist recommended I fly home and start another 6 cycles of the same chemo.  That is exactly what I did and before I had finished the additional cycles, I had weaned myself off all of my pain medications except for Lyrica, which is for nerve pain.

Today, I am trying to live my life as normally as I possibly can.  It has been difficult with the new limitations in my life.  Yes, I can walk and exercise, but I cannot play soccer or skate, both of which are my passions.  I read a lot.  I have watched some fascinating documentaries, and I’ve started going to church again.   All of these have made me more comfortable about life, and life after death.  I used to think I had the rest of my life to figure things out that I was uncertain about.  I have been forced to examine all areas of my life intimately due to this disease. 

I have been sharing my journey openly, writing my blog, and speaking on behalf of the Canadian Cancer Society.  I taught myself to knit, crochet, and gave taken on numerous DIY projects.  I am continuously trying to learn something new, like teaching myself how to play the guitar.

I have and participated in both reiki and massage therapy.  It is important to know the different options, services and supports available.  I also have seen a naturopathic doctor and take supplements recommended from him.

Last May, I started to juice vegetables again.  I researched what juicer would be best, and what, specifically, I should be juicing.  In addition to the juice, I began drinking plankton, ordered from British Columbia.  Today, I am drinking Chaga mushroom tea.  It is a relatively new discovery in North America.  Chaga mushroom is actually the fungus that grows on dead birch trees.  It is has the highest antioxidant properties in the world.

Not every day is good, but I am grateful for each new day I lean on my family, my friends, and my co-workers, all who have been a fantastic support system.  I don’t take them for granted, as I know there are many people struggling with illness and all of its burdens alone.

Today, I’m waiting for a call from Halifax as I have just been accepted into a clinical trial.  I try to keep busy, remain as positive, and hold onto every inch of hope that I have that this trial will be my miracle.

I am sure all of you know at least a handful of people either directly or indirectly who have been touched by cancer.  Everyone copes differently, both the victim of the disease and their friends and family.  Once the shock wears off I think it is important to stay focused and maintain as much of a normal lifestyle as you can.  I live every day HOPING that someday I will have my “new and improved” life back.  I want to give back.  I want to feel that I am doing something positive for people every day.  Make sure that you live the best life you can with remaining true to yourself.  Continue to learn how to work with your strengths and weaknesses, love, travel, find hobbies you’re passionate about.  Be kind.  Be both empathetic and compassionate.  Listen with not only your ears, but with your heart.  And for me, what continues to be most important is laughter.  Is there really any better feeling that laughing so hard you start to cry?

Thank you for letting my share my story with you. I hope that my words offer you a inspiration of hope in whatever life challenges you.