A Gosh Dang GIANT Cell Tumor

Buckle up, people.  Truth bomb...  You can still be super fit, eat well, get lots of rest, be ultimately “healthy” and STILL have a disease.   This wasn’t something I knew was possible. 

After 3 months of chiropractic and massage appointments, failed painful treatments, persistent low back pain and severe sciatica on top of sleepless nights - I bit the bullet and paid for an MRI.  The symptoms from the L5-S1 Disc injury we’d be treating were getting progressively worse and we needed to see the severity of this bulging disc to truly understand what the best next steps would be.  

 To my surprise (and I think to everyones surprise) the MRI revealed something much more intense.  Upon reviewing the MRI we discovered there was no disc injury.  The excruciating pain and disc injury like symptoms were actually due to a large tumour that had formed on my sacrum, compressing my sciatica nerves in both legs.  The initial shock set in, “how in god’s name is this happening to me”, and I remember thinking “this has to be a mistake.”  

The doctor reviewing the MRI with me wasn’t able to give me much information and we’d still require a biopsy to really understand what type of tumour this was.  He informed me that he’s only seen this a few times in his career and at first glance, he believed the tumour to be a rare cordoma and only 1 hospital in Boston would have the ability to remove it by using a system called Proton Therapy.  PROTON WHAT??!  It looks like something out of Stargate. 


Next came the results from the biopsy.  A Giant Cell Tumour, thankfully benign, but the flip side to it all was that this type of tumour is quite rare and due to the location, it would be incredibly dangerous to remove.  At that point, they started me on a chemotherapy injection called Denosumab.  They’d seen success with this type of treatment bringing down the size of giant cell tumours.  So, then began the self administered shot every 28 days. 

I spent the next month or so completely hospitalized.  I’d been experiencing nerve pain like no other, spasms that would last for hours.  I couldn’t walk on my own and i’d lost feeling and movement in my legs. I was scared, I rarely showed it, but I was terrified.  I was too proud to have a nurse help me shower and I was too proud to admit I needed help and that I wasn’t okay.  I was surrounded by amazing people, yet felt completely alone.  I hate to admit it, but my constant high and being in a constant fog was the only thing that kept me from facing the real underlying fears.

Once I was discharged from the hospital I spent my days waking up at 6AM, going to my couch, laying nearly all day and at 10PM I’d wheel myself to bed.  I was in massive amounts of pain, I couldn’t do anything on my own.  My world was slow and I grew more and more depressed as the days went on.  What if the nerve pain never goes away? What if I can’t walk normally again.  What if’s flooded my mind and as each day passed I was getting closer and closer to truly not wanting to be on this earth any more.  The days felt like an eternity but I began to have a few breakthroughs.  I was able to sit up straight on my own for very short durations and I took my first few steps unassisted.  It all came with a painful cost, but those little moments gave me an ounce of hope.  

In a perfect world, I end this story by telling you I kicked that mutha-f*cka in the face and booted it to the bottom of the ocean and it never came back again.  Our world isn’t perfect and neither am I.  I was on treatment from the time I was hospitalized until just over a year ago.  I came off treatment for about 8 months and just this past February after my routine MRI and bloodwork, we discovered the tumour was back.   Now, I’m back on treatment indefinitely.   

My life is 90% normal.  I deal with nerve pain on and off, I’m extremely tired what feels like all the time and the fear of losing so much time like I did when this first all began is crippling at times.  Although I’m incredibly optimistic about it all and I will say this is the best thing that’s ever happened to me.  I doubt I’ll ever see a cure or reason why I have this tumour in my lifetime.  Every time I prep my needle, I relive moments of my darkest hours. This is that 10% that lingers.  That 10% that feels like 90%.  I’m still on a journey to understanding how to navigate this emotionally and physically.  On a positive note, this diagnosis has pushed me to pursue my true dreams, to be unapologetically myself and encourage others to do the same. Life is too short to wait for things to happen. 

I'll leave you with a few 1 liners, things I went back to countless times, then and now. 

  1. Don't Believe Everything You Think.
  2. Your circumstances do not define you. You have a the autonomy to create the life you want to live. 
  3. The cream will always rise to the top. 
  4. Never take people or things for granted.

Much love xx 

Katie Fagan