This blog chronicles my life as I try to balance healthy lifestyle habits with my husband's penchant for pizza rolls and my daughter's desire to watch iCarly 8 hours a day. It contains a mostly humorous, kind, and somewhat spiritual look at everyday life and the people who live it.

Monday, June 14, 2010

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


"M" said...

WOW, thanks for sharing this!!!! You have a great perspective and something to teach us all, thank you. Why wait until something happens to live our best lives, right?

(Friend of Chellie)

Sarcastic Bastard said...

Happy (belated) Birthday!!!! And many, many, more. I'm an asshole because I forgot to call.


Love you.

Sarcastic Bastard said...

By the way, it was a very interesting post.


Beth said...

M, thanks for the commenting, it's nice to have you stopping by!

Beth said...

SB, thanks for the birthday wishes. I am so awful at sending cards/gifts/phone calls on time that I completely understand time getting away from you. I love you too!

Karen@StrictlySimpleStyle said...

What a moving story Beth. You always seem so upbeat and positive. I have no idea how I would react. You have probably heard that song, "Live Like You Were Dying" I wonder, if you have an experience like you did, is that song really a reflection of how you would feel and react?

Thank you so much for sharing this story. I have a sister with a form of Muscular Dystrophy and she doesn't like to discuss it. She told me once to stop asking her how she was doing. She said, "I am more than my diagnosis." So, I won't ask how you are feeling in case you feel the same way. Just know I'm grateful that you are doing well and that I have had the chance to "meet" you.

All the best.

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Anonymous said...

I'm shocked to read this because I recently had an epidermoid removed from what sounds to be the identical location and mine was also wrapped around the artery. My surgery went well in that the majority of the tumor was removedand I'm told about 10% remains around the artery, which could not be safely removed. I will have to be monitored for the rest of my life. I had a csf leak issue as a complication of the surgery. Did you experience this issue? It's not yet resolved. I have two young children and Im happy and grateful to be alive.

Sarah said...

Where was your surgery?
I was diagnosed 21/12/12 with the same, invading the pons & wrapped around trigeminal nerve. At the moment the surgeon is deciding what to do, in the mean time I have lost my independence, I fit, difficulty seallowing, dizzy loss of balance, temporary loss of vision- these symptoms have progressively got worse since I first visited my gp 16 months ago- but failed to do anything. I had to pay private for an MRI scan.So as it stands we are currently in limbo land!! X

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Priyanka Shruti said...

I have been following this website for more than 2 years now, admin kindly post and share this to give other brain tumor patients hope that they can get a cure.

Three years ago I was diagnosed with GBM after a CAT scan. I went through neurosurgery, radiation, and 14 months of chemo treatments but the symptoms all remained and even doubled, the constant thundering headache, seizures was twice than it was before, i could no longer think straight and i had constant mood swing and trouble speaking i was almost feeling at the gate of hell because these symptoms were unbearable. I am retired but very active spending my time to make the world a better place. I retired from a career in law and non-profit administration, and judging from how active i was this new life was not working and i was patiently waiting for when i will give up the ghost. My husband never accepted the fact that he will lose me to the cold hands of death which was what made him to seek other treatment options and that was how he came across "elixir" a herbal medicine treatment which i took for 12 weeks and it gave me a second chance in life, gave me a new life and totally cured me of my cancer. My neurologist had told me before then while i was at the hospital that i had less than 4 months with the rate at which the tumor was growing and expanding. I am happy today because i am completely free of cancer because i have ran several tests and diagnosis because i am still in shock on the efficacy of elixir. Never give up hope or rely only on chemo or other surgical treatments because herbs work too, i never believed until now that i have experienced it. You can contact doctor Rahul personally for advise, counselling and how to get elixir on I am grateful for every day that I am still alive and well.

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