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Chanez

Erasmus

Synovial Sarcoma

Survivor

Life as I know it

 

Beginning of 2012 I thought:

Why is my leg so painful? Maybe I pulled a muscle while playing hockey, I should probably go to the fisio.’

 

Beginning of 2020 (pre covid) I thought:

‘I don’t want to die! I don’t want to feel pain! I really don’t want to die!’

 

These two thoughts seem worlds and years apart but has to do with the same thing, the awful thing I did not see coming - cancer 

 

I was laying in bed one evening in August 2012 when I felt a lump in my left thigh.  It was not painful. Was it there yesterday? I remember thinking its weird that I only noticed it now.  I told my parents and I left it of a few days to see if it will disappear.  

 

Beginning of September, after a few days, I went to my GP.  He sent me to the X-ray department to make sure the bone is fine- all clear- but he said he does not know what the mass could be and he sent me for an MRI.  It was late in the afternoon and I was still calm.  

 

On my birthday the next day, the doctor phoned me and said he got an appointment for me to go and see an Orthopedic surgeon regarding the mass in my leg, in two days time - I was starting to get worried and I was emotional the whole day! So to keep my story short we dropped the MRI disk at a family friend who is also an Orthopedic surgeon on our way to my birthday dinner that evening.  

 

The next day she called and said we must meet her at the hospital, Prof Le Roux will see me in between his surgeries.  So off we went. He looked at the scan and was not very worried - said it is probably a soft tissue mass that is benign. The next morning he was going to remove it.  I was positive, emotional but positive.

 

I did not expect to wake-up in the ICU and was not at all prepared for the news that I received that day -  ‘It was a malignant tumor called Synovial Sarcoma’.

 

I just turned 22 and did not completely comprehend the ..... well situation. 

 

To make sure it hadn't spread to areas close by, I went for a sonar where they could not pick up my ovaries, so to the Gynocologyst I went.  About 10 days after removing my Synovial Sarcoma I had the surgery to remove a 'cyst', but it turns out it was a 'Teratoma'.  Luckily nothing related to the Synovial Sarcoma.

 

So now I was sent to the Oncologist to find out that to do next... 6 weeks of radiation to my upper thigh. Not so Bad and it went by very quickly.  So now I have to go for X-rays and CT scans of my chest and leg every 3 months for 2 years.  All of the scans through these 2 years showed no recurrence.  Now my checkups was moved to every 6 months.  So in March I went for my first 6 month checkup, first the chest scan, which came back clean, and now a sonar of my upper thigh.  They picked up a mass that was not on any of the previous sonar scans.  I was sent for a MRI and there 2 tumors presented.

 

Back to step one... I had surgery to remove the tumors 8 April 2015 and it was on my vein and the other tumor into the muscle, so they removed both tumors and a piece of my muscle.  The recovery time was longer due to the radiation I had in that area.  So again to the oncologist, he was very negative and basically said that there is nothing we can do now and we will just have to wait for a recurrence... That is not good enough! 

 

I went to another oncologist for a second opinion, so there are 3 options, amputate the leg, in plant radiation or nano technology when the tumor recurs in my leg.  If it is in my lungs, I can go for chemo, but chemo has almost no effect on Synovial Sarcoma Tumors, meaning its bad news.

 

My orthopedic surgeon kept on sending me for scans every few months.  In August 2016 they picked up another tumor in my left leg (same place as all the previous tumors) and the Dr removed the tumor and also did a arterial bypass as the tumor was on the artery.  I also went for hyperbaric therapy (10 sessions) after the operations which helped the healing process.  

After that everything was great and I carried on a normal life still doing scans of my leg and lungs - nothing!!!

 

I had a baby December 2018 and during my pregnancy I developed bad lymphedema in my left leg - so I just kept on wearing my compression stocking.  I went for a sonar of my leg on 27 November 2019 and they did not pick up anything.

 

Went for a MRI in February 2020 and they picked up a mass in my leg.  On the chest X-ray there was nothing but Dr sent me for a CT scan of my lungs.  They picked up 3 small nodules on my liver and a bigger nodule on my left lung (between the lung and plural membrane).

 

So the plan was to do biopsy of my liver, lung and to then remove the tumor in my leg. The biopsy of my liver was clear, but the nodule in my lung presented the same as my leg - Synovial Sarcoma.

 

The Dr removed the entire nodule in my left lung, but not with wide margins.  The Dr’s also removed the tumor in the leg and was able to remove it without doing another bypass.  

 

I tried hydrotherapy again, but I’m very anxious, so decided to leave it for a while!  I also had an appointment with my oncologist to work out a plan! They talked about radiation for my lungs and a smaller dose of radiation on my leg again (as I've already had radiation on my leg in 2012). I had a PET scan in March 2020 that showed nothing except surgery scarring and something in my uterus which can be from the pregnancy.  Oh yes, I found out I was pregnant again before all or the operations started.

 

So my oncologist suggested to wait and if any other tumors occur.... surgery, and if everything cannot be surgically removed, I can start drinking Votrient (Pazopanib).  That did not seem like an option to wait till something else happens, so I went for a second opinion.  This oncologist put me on Votrient to try and prevent it from spreading.

 

11 June 2020 I started drinking the votrient.  It went well for 2 weeks but then I started to feel ‘just not me’.  The next day I started to get a fever and my leg was a painful -  Ahhh what now!!

 

Went to see my Orthopedic surgeon and my CRP count was high but they could see nothing on the sonar of my leg.  I came home and had to do the tests again 2 days later, as he thought an abases was busy forming and it takes a while.  When I did the CRP count it was extremely high and on the sonar the abases was visible.

 

Went for Covid test - negative.  And on the 9th of July 2020, I went for an operation to remove it. Stayed in hospital for a week till blood work was normal and to get IV antibiotics.  I had to stop drinking Votrient and had to wait till the wound closed before I could start it again - another problem.  The wound took about a month to close.

 

Once again started with the Votrient end of August 2020. On 9 September 2020, I didn’t feel ‘myself’ again.  Felt like I had a sinus infection and I was extremely tired - what now??

 

10 September 2020 I contacted the Doctor and they sent me for a Covid test and other blood work as well.  I tested positive and my bloods didn’t look great, so they put me on antibiotics to prevent a secondary infection and had to stop my Votrient again.  

 

Well, I started with the Votrient again on 1st October 2020 and went for a PET scan 6 October 2020 and had to wait more than a week to see the oncologist for my results.  The anxiety got really bad but luckily everything came back clear and my blood work also looked great.  

Last week I went for a PET scan - an emotional day on its own.  From there the emotions just kept climbing.... just kept climbing - and the anxiety also got worse.  

 

So how can I explain my feelings:  I can’t 

Over the past few days, I played out so many scenarios in my head. Even though I always try to stay positive - all of my scenarios were negative.... I don’t know why, maybe human, I guess.  It felt like a heavy pressure on my chest suffocating me, preventing me from breathing and staying calm.  These negative thoughts kept circling and circling and that was all I thought about.  Obsessing over it.

All I wanted to do was cry, and cry, and cry some more and scream at my life for how unfair I think it is.  How can my body turn against me...... 

Even though the negative thoughts will always haunt me, I feel like for the first time since March the pressure is lifted from my chest and I can finally breath.... just breath.

 

And as I sit here typing this, all I want to do is cry, and cry and cry some more - the difference between yesterdays tears and todays tears is.... I’m sitting with a smile on my face and hope in my heart... and today I’m happy!

I can Officially say I’m ME ... again! 

 

This year really brought some tough challenges - but I’m always ready to fight as I wear the armor of God!!  Without my Family and my amazing husband and daughter, I would not have fought like I did.  

 

I realized I’ve changed.  I’m stronger than I think, more brave than I realized, I can do anything and I will never give up.  I’m just ME!!!

 

When I feel anxious, worried or afraid, I remembered God said:

Don’t worry about anything,

Instead, pray about everything.

Tell God what you need,

And thank him for all He has done.

Then you will experience God’s peace,

Which exceeds anything we can understand.

His peace will guard your hearts and minds

As you live in Christ Jesus.

Philippians 4:6-7

Well that is my story in a nutshell - seriously, I haven’t even touched the emotional side of this ‘adventure’.

 

All I know is I am still alive, living my life as I know it! I have the best support system and now I have a daughter to fight for.  She is my whole world and I want to raise her and teach her life lessons, get her ready for the first day of Grade 1, cheer her on on the sport field, help her get ready for matric dance and watching her start a new adventure on her wedding day.  

 

I want to live and I’m not scared of fighting!

 

Fight your battle and wear your scars with pride!!! It is part of what makes you, YOU and you are perfect!! It does not mean you have to be positive and okay all the time, it means embracing your sadness and to cry if you feel you want to  (I know I cry often and it actually makes me feel better).

 

I feel this journey has made me strong.  I would not be the person I am today without it! It changed the way I look at life.  I’m a positive person and I enjoy my life.  I would obviously not have chosen this for myself or anyone else, but it is what it is....  and I can only embrace the burden of cancer!!!

 

God walks beside me, He carries me, He shelters me and He protects me.  

I will not fear because I am not alone.

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Email: evy@filotimo.org.za

Phone: 076 719 8358

Registered Charity: 

NPO 233-525

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