What it's like to have a brain tumor

Recently a friend of mine suggested that I blog about what it's like to have a brain tumor.  She was suggesting this because I was telling her that the most frequent question I am asked by anyone who discovers my medical history is "how did you know you had  a tumor?  What were your symptoms?"  I completely understand this line of questioning because let's face it, if I say "well I had a weird blue rash on my stomach" we all know that every single person will look at their stomach for a blue rash as soon as they can.  It's human nature.

I try not to dwell on "the tumor" in this blog because I (hopefully) have a lot more dimension to me than just a 5 yr old diagnosis but I certainly don't mind talking about it, so here goes.

Five years ago my left eye began to twitch.  The twitch didn't go away after a week or a month or even 2 months.   Steve and I thought it was stress.  Finally it was bugging me so much that I went to a neurologist who prescribed 5 mg of valium to see if the twitch would decrease or even go away.  I took the valium for 3 days.  During those 3 days the twitch didn't stop.  In fact I was starting to feel an odd "pulling" sensation on the left side of my face, as if the muscles were pulled down just for a second and then released.  The neurologist ordered an MRI for the following week.  By the time the MRI came around I was experiencing a "zapping" sensation in my face.  Have you ever walked across carpet in socks and then gotten a shock when you touched a light switch or another person?  It felt exactly like that.

The MRI revealed a squash-shaped mass that was wrapped all around my brain stem and extending toward my left ear.  They gave me an injection of dye to check for cancer.  The center of the tumor lit up with the dye (which is bad) so my initial diagnosis was of an inoperable cancerous mass surrounded by necrotic (dead) brain tissue.

That was not a good day.

Later testing and evaluation revealed that what was originally thought to be cancer was actually an artery that had been completely surrounded by the tumor.  The tumor was thought to be benign and the diagnosis was an epidermoid brain tumor.  Very rare.  No known cure.  Surgery is best treatment.  Because I was exhibiting symptoms but was in overall excellent health I was considered an excellent candidate for surgery.  I had a brain tumor, but at least it was benign!

That was a good day.

By this time the left side of my face was mostly paralyzed.  It took massive effort on my part to talk, blink, eat, drink, and swallow.  Our family took a trip to Chicago and we ate at the Cheesecake Factory restaurant.  The paralysis was so bad I was unable to chew my food because I couldn't make my mouth work properly and the food kept falling out.  I was embarrassed, scared, sad, and angry.

That was not a good day.

Three months after diagnosis the decision to have surgery was made and the date set.  I was terrified because I knew going in that the surgeon wouldn't be able to remove the tumor, just "deflate" it because of its proximity to and wrapping around of the brain stem and a major artery.  At that time I wasn't worried about living with the tumor long term, I was just worried about surviving the surgery.

That was not a good day either (I threw up a lot from the anesthesia, which is hard to do while not moving your head).

Well survive I did and so here I am today with what you could call a chronic condition.  I believe that I have complete control over whether or not the tumor grows because I believe that diet and exercise play a significant part in abnormal cell division and our bodies' abilities to control cellular overgrowth (which is all a tumor is when you think about it).  I have not yet met a brain surgeon who agrees with me about this, but I know deep in my bones that I am right.  When I discovered the "cure" for everything is a mixture of diet, exercise, and attitude I felt empowered.  Strong.  Able to defeat all obstacles.

That was a good day.

Life is made up of many days, however, so sometimes my diet is pristine and I am a model for healthy eating, exercise, and stress management.  Sometimes my diet is a mess (as you well know), exercise is sporadic, and stress is managed by consuming sugar.  I have to be very careful to limit the bad times because I don't want to promote abnormal cell growth.

So what is it like to have a brain tumor?  Well, it's like life always is: there are good days and bad days.  I feel a strong sense of being on the right path and have tremendous faith in my game plan: research what causes abnormal cell growth (ummm...SUGAR causes abnormal cell growth), limit my exposure to as much junk food, chemicals, toxins as possible, and exercise to keep the lymph circulating and my overall level of health high.  But isn't that life?  Call it a brain tumor or high blood pressure or diabetes or a heart murmur or arthritis or depression or whatever else ails you.  Everybody has something that scares them, challenges them, reminds them that life is precious, sacred, and brief.

So much of what you read in this blog is my continual search for balance, health, laughter, and love and I know how critical the search is because I remember how I felt in those early days after diagnosis when I thought my life would be numbered in months, not years.

I love my life.  I wouldn't change a single thing, not even the brain tumor because I have learned so much from the experience and it continually grounds me, helps me to re-focus on what is really important.  I recently celebrated my 40th birthday, a milestone I didn't think I'd make just a few short years ago.  Along the way I think I'm gaining a little wisdom:

Every day that I am alive, my family and friends are alive, the sun rises and the stars shine is a good day.

My wish for you: Have a great day! 
With Love, Beth