Sarah Epperson

First post: 11/7/2016 Latest post: 7/17/2017
I never dreamed that this would be something I would write about, especially at 34. 

On Halloween (my favorite holiday) I was diagnosed with a rare eye cancer called ocular melanoma in my left eye.  It is unlike skin melanoma, is not related to sun exposure and is typically found in adults around 55 years of age.

How did this begin?
I first started to notice a change in my vision in late May, early June of this year.  It became apparent that something was amiss when I would walk from my bright bedroom into my dark hallway;  I would see this pulsing light in the lower portion of my left eye.  Almost what those large fluorescent light bulbs look like when they are about to burn out.  I would think...man that is so strange,  what a disturbing sensation, it will probably go away, maybe a nerve is being pinched or something.  Then I thought...I should keep tabs on this and figure out when it is happening and whether it was under certain circumstances.  But there was no rhyme or reason and was happening all the time.  And so began my long journey with the eye doctors.

What did they find?
I went to 2 different eye doctors and took a slew of different tests.  Some showing that I had 20/20 vision and could see just fine.  Another test called a color field test showed that there was indeed a spot of my lower peripheral vision that was "black" or not registering information.  They looked deep into my eyes with lights and lenses, dilating and numbing them over and over.   But nothing!  "Come back in a couple of weeks," they said "I'm not sure what this is."  So I did and again the tests showed the same things.  That is when the doctor said, "Well Ms. Epperson you've just earned yourself a brain scan."  This was to determine if there was any lesions on my brain creating this strange vision problem.  

I was terrified!  A brain scan?  Me?  How will I afford this?  Will my crappy insurance cover this?  What are they going to find?  And on and on my thoughts wondered.  So I lay there with my head surrounded by a plastic cage inside a giant pounding tube listening to The Police to calm myself.  I was hoping once that was done we would have some answers...but they showed nothing.  Which was good, but I still had no explanation as to what was happening.  The doctors told me that maybe I was having ocular migraines and it would probably go away.  "Come back in 3 months"  they said.   

I just brushed it off and carried on with my summer...if they didn't seem concerned then neither was I.  Right?

About the time I was due back for a check up I started to notice a BIG change in my vision.  It was no longer just this humming light.  It was central, darker, blurry in places of my vision that really counted.  I noticed it was very apparent when I would look at my phone or my computer screen...like the computer was bent inward distorting all the words and images.   I would squint and rub my eyes like it wasn't happening.  

So back to the eye doctors I went.  Where different more microscopic photos of my retina were taken and that  is when he found the lump.  The photos showed a dark spot like a 'freckle"  on my eye;  they showed a lump on the back of my retina that was creating fluid (which is what I was seeing).  The doctor told me I needed to see a specialist at the Mayo clinic and that he had a "lump" on his eye too and that it was nothing.

He never once used any descriptor names or said the word cancer.  I first heard a nurse who was helping me make appointments say they thought I had ocular melanoma.  And THAT is when I really got scared.

My insurance would not cover the Mayo clinic so I was directed to the U of M oncology department.  

What was the final diagnosis?
There my mother and I were on a rainy Halloween day at the U of M to get more tests done.  There was no way I was going to let a potential cancer diagnoses ruin my day.  So I dressed in my Halloween leggings with witchy boots, an orange sweater and a tiny witches hat to make me feel better about all this nonsense.  I also brought candy and passed it out to anyone who crossed my path or ran tests for me.  It delighted me to see their surprise and smiles upon sweet delivery.

But after 5 torturous hours of intensive testing on my eyes the doctor came back and confirmed what he had suspected and that was that I had a cancerous tumor on my retina and its called ocular melanoma. 

What now?
First we need to make sure that the cancer has not spread anywhere else in my body...and if it hasn't then I can have a surgery where they will place a plaque of radiation behind my eye on the tumor.  This procedure I am told is 90% successful.  Which is hopeful.  If it is not they will have to take my entire eye..terrifying.  I am told that there will be long term effects to the radiation such as permanent vision loss or I could be legally blind in my left eye. 

There is so much information coming at me right now and I am feeling tremendously overwhelmed.  I have no clue what the future of my life or my job looks like...literally.  I have so many emotions going through me right now and I would greatly appreciate all the kind words,  prayers and good vibes you all can muster up.

I will keep you posted when more information comes across my path.


 



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