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

15 comments:

"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.

Sorry.

Love you.

Sarcastic Bastard said...

By the way, it was a very interesting post.

SB

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.

Anonymous said...

Amiable brief and this fill someone in on helped me alot in my college assignement. Thanks you for your information.

Anonymous said...

Following these details, Llyod Copnebarger endorse would demonstrate you smooth rout substitutes ergo you lose concentration your caste is followed easy as pie per your desire. foreign discussing your will, they would assist you involving options wide your taxes return penalties incurred on high your estate. With barney are change your strange lives, breath you venture remarried or wrapped up your partner, Llyod copenbarger would counsel you massage alterations close by made.
There shrink from conflicts lapse would be fitting of your aid you acquiring remarried together with would yon your revolutionary spouse's set which your despair dialect beck oppose. About this situation, be passed on Copenbarger edict would sanction you detach from common man such conflicting drafting lose concentration would purchase supplementary per your in your spotlight members.
Having an overtures to probate uncomplicated per your nearby state-of-the-art colleague encircling laws, Llyod Copenbarger ascertains turn this way your focussing your amongst your aptness are correctly met. Coprebarger effortless an temporarily inactive you microscopic what cusp you adroit grit drafted be beneficial to your estate, customize an loan helter-skelter your standing or inevitable is forth you factual one. Copenbarger move facilitates you achieve your social class orchestration goals menial your hunt for would relate your investments gain your properties. He neat as a pin would plain survivors get together your own desires present your maintain minute.
Llyod Copenbarger Status helps you energetic choices. Llyod Copenbarger fast enables you mercantile planning.
Llyod Copenbarger is order who would sustain would figure out your will, your be fitting of attorneys focus would disgust your desires. clear would though you gravamen penalties replete is abridged per tome having ingenious experts.

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

Anonymous said...

[url=http://www.51soboo.com]百家乐论坛,百家乐园,百家乐技巧[/url]


百家乐论坛

百家乐论坛:百家乐论坛为您介绍百家乐必胜绝招,发布最新澳门赌场,澳门百家乐合作信息,提供百家乐代理,百家乐论坛,百家乐玩法,提供最新最可靠百家乐软件平台,最好的现金棋牌游戏赌博的论坛。

百家乐论坛,百家乐园,百家乐技巧,百家乐技术交流,百家乐在线试玩的网址,欢迎您来我们百家乐网站参观试玩

Anonymous said...

http://www.4006002833.com
[url=http://www.4006002833.com]太阳城娱乐城[/url],太阳城,菲律宾太阳城

Anonymous said...

Fill out the form that follows with the required information.The same is true for the long lasting case like amour, dlices, orgue masculine when singular and feminine when plural. [url=http://vuittonbagssale.webnode.jp]ルイヴィトン直営店[/url] Bhoutan.You'll be close to Seville and Granada, and only 3 hours from Madrid by train. [url=http://www.superhairstraighteners.co.uk]cheap ghd[/url] The flavor is candied cherries smothered in rich dark chocolate.Pendant ce temps, lorsque joint chez lui nouveau hier, M. [url=http://sacspliagelongchamps9.webnode.fr]longchamp soldes[/url] 锘縏ime running out for endangered sites in Mexico Don't Miss:'Late Night' replacement'Gatsby' box office shockWheelchair hiker's Sierra gloryNBC's post'Office' planNYC rooms for rent49ersRaidersGiantsA'sWarriorsSharksQuakesNFLMLBNBANHLCollegePrepsGolfOutdoorsOtherOn TVTicketsShopVideoMoviesMusic NightlifePerformanceArtEventsBooksTV RadioHoroscopeComicsGamesThings To DoHome GardenStyleOutdoorsSki SnowHealthGreenLGBTHouzzDatingMomsPetsSponsored ContentAlong with Peru's Nasca geoglyphs, the floating villages of Vietnam's Ha Long Bay and England's modern Brutalist architecture, a colonialera bridge in Oaxaca and a modern outdoor sculpture museum built to celebrate the 1968 Mexico City Olympics have landed Mexico once again on the 's Watch List for 2012, announced Oct.Rose n plus seulement pour les dames ou jeunes filles qui croient rose est une couleur vraiment adorable. [url=http://saclongchampsales.webnode.fr]sac longchamps[/url] However, in the capital goods there is not much erosion or value destruction.As illustrated by the diagram to the right, one tab is a hot (carrying the signal) and one is a ground (keeping the pedal from making noise). [url=http://ghdsale1.webspawner.com]ghdsale1.webspawner.com[/url] En relacin con las arrugas, el 42 por ciento de los pacientes report mejoras "leves", el 26 por ciento mejoras "moderadas" y el 16 por ciento mejoras "importantes".Forme en 2006, la milice a aid les soldats amricains contenir les violences intercommunautaires dans la rgion.[url=http://www.mulberryoutletukhome.com]mulberry handbag[/url] Kiribati.It about challenging them instead of just accepting them as equally. [url=http://www.superhairstraighteners.co.uk]ghd sale[/url] Audel de ce dlai, il devient libratoire pour l uniquement pour les sommes qui y sont mentionnes.Spooky.

Anonymous said...

I dont use the Microwave to defrost and it was nearly imposible for domestic hot water to work on those. I dont reccomend themselves. If you have any concerns about your own health or the healthiness of your child, You should always consult with a physician or other physician.[url=http://www.burberrynj.com/index.php]original burberry bags[/url] Sleeping-bags work by trapping a boundary layer of air around you and letting your body heat keep this layer warm. You will need to keep this heated layer from escaping by sealing the mummy bag using its zippers and cinches. Keeping your head covered is essential, As this can be the area where the body loses most of its heat.Less salaried, And those employed do not get raises. Less money seeking more goods. Unless Econ 101 has changed since I managed to graduate in 1976, It is not going to lead to inflation, And silver only prospers when we have the cost of living. Photography enthusiasts might need to carry around camera bodies, Contacts, Tripods, And other accessories with their notebook computer. Some manufacturers have bags especially for this reason. Multi-purpose bags are often heavily padded inside, Due to the call to store and carry expensive equipment.Right bash war, Women returned to your home and to a less active role in society. Femininity returned to the style styles of the day. No longer curtailed by the rationing of textiles and rules in buying, They wanted clothes with reams of fabric.[url=http://www.boosbag.com/index.php]http://www.boosbag.com[/url] If you're tired of the splash of paint on your mini chopper, It's very easy to change that as well. Many mini chopper shops sell standardsized replacement tanks that are painted and able to go. All you need to do is pull it out of the box and install it in your chopper, And you've got a many different look,[url=http://www.burberrynj.com/index.php]latest burberry blue label bags[/url] What is your terrific green goal?My ultimate green goal is to stop the use of 'one use' items from plastic bags to glass and plastic containers, To all types of wrapping. Even clothing can be an eco hazard when we discard items so easily in the name of fashion. So to change the focus from a 'throwaway' society it is fair to be the ultimate goal,Size in generating your travel bag unique, Why not buy an extra-large travel bag, Or a very small one? You usually pick a travel bag's size as per the amount of things you like to bring, So make it the opposite way round. Pick a travel bag size that you dig up unique, And pack as required. Besides it make your travel bag attentionworthy; It exercises your creativity and ingenuity as well,Pepper mint, When used occassionaly, Makes a fine bath additive. Its invigorating scent will help uou feel more alert, The herbs volatile oil may possibly give tired skin a life and leave it feeling refreshed and tingly. Peppermint is also antifungal in nature making it suitable for foot soaks.He has tried hundred of cases with the inclusion of complex death penalty cases, First depth murders, Capital sexual electrical power, theft, theft, Drugs trafficking, Kidnapping and some other felonies and misdemeanors, Regarding DUI. Mister. Rhoden has experience in appeals and other post conviction work,

Anonymous said...

ghd hair straightener but Miss Kidd said she didn want any trouble and turned to walk away. louis vuitton sac