Amy Knowles | CaringBridge

Amy Knowles AmyKnowles

First post: 6/1/2016 Latest post: 6/5/2016
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MY STORY - AMY KNOWLES

In 2009 I was experiencing a lot of piercing headaches, some jabbing through my right eye.  I was referred to Neurologist Dr. Robert Stein in Rockport, Maine.  He reviewed my MRI's and told me I had MS.  This really freaked me out since I saw the devastating effects it had on my friend Peter Bray.  After a while I got a few more physician's opinions.  The last doctor told me I could not have MS because the bright spots on my brain were on the wrong side of my brain.  

Foot note:  Bright spots on a person's brain could be Leukodystrophy which is an overall term for multiple possible diseases, MS just being one of over 40.  Bright spots could also be nothing to worry about.  So, when I received this last physician opinion I relax (although very angry with Dr. Stein). 

In the many years after, not one of my doctors suggested I have an updated MRI.  

In, I believe late spring of 2015 I mentioned this to my new doctor and suggested it was time to do some follow-up, which she agreed.

The new MRI's showed that I had a brain tumor.  I knew something was wrong since she did not call me right away to give me the results.  She was always prompt about that.  Anyway, I was referred to Dr. Robert Wilson, a very highly respected surgeon in Scarborough, Maine.  Turns out he was the doctor that operate on my spinal stenosis many years ago.  A very odd dude but good with a surgical knife.  

During my first meeting with him he told me it was a very slow growing tumor and we could wait to operate.  Check it in 6 months and decide if surgery was in order.  When I saw him 6 months later he yelled at me for not having the surgery right away after our first meeting.  I told him I wanted to do some research about alternative treatment prior to scheduling surgery.  He understood but recommended I not wait very long.  If the tumor grows inward it might not be operatible.  It also mentioned he would be able to get it all out and I will not need radiation or chemotherapy.  Yippee, I thought to myself.  The tumor operation did not scare me as much as chemo and radiation.  

I went ahead with the surgery shortly thereafter.  Dr. Wilson came in the next morning to tell Leslie and I that it went well and I would not need chemo or radiation because he got the entire tumor out.  

  A few days/weeks (I don't remember)  am getting back into my car at the Post Office and I get a call from someone to set some oncology appointments.  Well, that freaked me out.  I called my local GP in a panic and ask her to talk with the surgeon.  Turns out it is protocol to be sent to an Oncologist.  Evidently, even if a surgeon thinks he got it all there is no way of knowing.  Cancer grows with areas reaching out like fingers that can not be seen, something my surgeon should have explained to me.  

It was at this point I became aware of a man on a crusade called "The Trueth about Cancer".  Very interesting with facts the doctors will only admit to if you confront them.  After some research and more discussions with my doctors I agreed to meet with the Oncologists and then agreed to start Radiation, then Chemo in the future.  

So, this is now, June 4, about half way through the radiation which will end about the end of June.  Chemo starts the beginning of August for 6 to 12 months.  That is a LONG time.  








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