21 YEARS

2010-09-20T21:27:00.000-07:00

So, here I am. A 21 Yr BSG survior!! Crazy...hard to understand, hard to know why...
I wonder...We are ready to celebrate the Florida Brain Tumor Association's 20th anniversary.
And still the dreaded GBM remains after 20 yrs the most common & dangerous brain tumor - 30% of all brain tumors. Not much has changed in all these yrs reguarding the dx of this beast.

The FBTA today is a major force in the brain tumor community, offering 5 support groups in Florida, a 3 day patient/family "Sharing Hope" brain tumor conference every year. We are making a differnce supporting & educating patients over the past 20 years. I am so pleased. I NEVER had the vision of what the FBTA has become, nor did I have the vision that I'd be given the extrodinary gift of time to watch my sons grow into incredible, rsponsible loving young men. Who would have thunk??

Could Be Worse, You Could Always Have a BRAIN TUMOR

2007-11-24T21:51:00.000-08:00

Let me start by telling you that brain tumors have no eyes; they can strike anyone, at any time. Any race, age or color; SNAP, you got the picture. In fact, they are the leading cause of cancer death in children, ages 21 and younger. Bet you didn't know that. Here's another one, there are over 136 different types of brain tumors. I'll save all the science for another night.
I'm going to open up to anyone who's curious enough to browse around here. For the first time , I'm gonna share a small piece of myself with anyone who might want to listen. I've never done this before. Not ever. I mean, I always thought, why should I? What's the point, what difference will it make to my life or anyone else's for that matter? Everyone has a story. And I really don't think anyone really cares anyway. When someone asks you how you are, do you think they really want to know? Answer that one for yourself.

But, what the heck... and I'm not even sure, is this who I am now? Am I defined by my brain tumor? Ok, let's try it... I am S.S. aka " diva " a 21 year brain tumor survivor of a not- so -well behaved brain tumor called a " brain stem glioma ". NO, I will NOT let this define me.
This is NOT who I am. I am a Mom,daughter, sister, cousin, friend, artist, advocate, liberal, sports fanatic .... this is a more acceptable way to look at myself from the outside looking in.

My journey of life changes began when I became progressively sick with an on set of a variety of very unpleasant symptoms in mid 1987 which continued to be misdiagnosed for 1.5 years. I was married at that time for 12 yrs. to my high school sweetheart Larry,we adored each other; we had 2 adorable sons, Bryan , 4yrs , Evan, 1.5 yrs. I was an art director, finances were straight, tennis courts were the place to find me when I had any spare time. I was a good athlete, competitive, accomplished in tennis, earning 1st in state in high school, lettering, then 1st seat at Northern Illinois University,varsity team. No kudos, just establishing myself as stable, happy & healthy

Imagine this : A 5.5cm. x6.5cm tumor was discovered in my brain due to my own insistence to have a MRI, because I knew I had a brain tumor. Once finally diagnosed, I was actually relieved & immediately went into fight mode for my family...no tears, just didn't feel like it. No time for that. But damn it, I knew that bastard was there. I spent hours looking at myself in the mirror in a trance chanting, " I have a brain tumor". A story for another late night. What is taught by misdiagnosis? listen to your body, noone knows it better than you; trust yourself. It would have been easy to just trust these so called "doctors" & walk away with their misdiagnosis, as my family did. After all, I had never been sick a day in my life, these local losers ( this is why they ARE local ) insisted it was stress, "all in my head", ( IT WAS ) I needed psychological help. Keeping things real: The reality is ,they were too busy to listen, to give a care.... & it was certainly in my head. Angry? YOU'RE DAMN RIGHT I WAS. Angry that my own family did not believe me. I felt betrayed. After all, these "doctors" were telling them different. They preferred to listen to them, why not, didn't that make things easier for everyone ? Can you imagine being so sick & the people you thought you could count on at a time like this were in crushing denial. No support, noone telling you they would do whatever it took to get you well. That's what I expected. That's what I needed. Yet I was alone, already in my very first battle without even realizing it.

Dear G-d , I was having seizures in front of them. I was struggling to survive, to care for 2 small children, to keep them safe from whatever was pulling me down. I can remember one afternoon diapering my youngest son Evan when the left side jerking began. I was terrified. Instinctively, I pulled him to me as close as I could. After an unknown period of time, there we were on the floor. I was very disorientated. I immediately reached for my baby. I realized I was "out" long enough for Evan to have amused himself by emptying the entire tube of Desitin all of his body and cover us both with baby powder. Angels all around, he was safe.

In retrospect, my husband, my family, just couldn't see... because they wouldn't allow themselves to see. They couldn't look. How could they not see this? Light bulb on. If they refused to see a very sick wife, a very sick daughter, then in their minds, it just wasn't happening. It was easier for them to accept that those bozos were right & all I needed was a vacation or to talk to a shrink a few times & I'd be good as new. Who wants to think someone they love is seriously ill anyway, right? Ohhhhh, that's what denial means, now I get it.
Interesting. Searching my soul, I can't tell you if I really truly forgave them, even to this day. 21 years later. The despair, isolation, loneliness, I still recall. Ten years later, I remember my late, dear husband saying to me," Are you ever going to forgive me for that?". My answer then & now is the same. I don't know , I have tried to get past it. I know forgiveness is really the root of happiness. I'm working on it, I am. I need to let go.

And so, my journey, this " new me" was the beginning of a new chapter in my life.
Like it or not, here I come! Daily challenges, new faces, new questions. No more looking for who I was then , but work on accepting who I am now. YES at times even today, 21 yrs out... accepting losing things too often & hoping they just appear somewhere; acceptance of taking naps, asking for help, asking over & over again, asking for directions, getting lost even in my own neighborhood. Seizures that occur at the most inappropriate times ; talk about feeling out of control! Acceptance of this is the way it is now. Realizing what is really important.

The surgeries & many treatments have left me with challenges, it's all good.
A small price to pay for a wonderful gift of time no-one thought I'd have. I never need to be reminded how blessed I am to be a SURVIVOR, 21 yrs! CRAZY ! Sometimes I wonder, why?
All I know is I must leave a legacy. There has to be a purpose.

Here's the scoop, for anyone that might be a teeny bit curious. And for the rest of you that aren't, sorry, you can just skip this. The tumor pathology is malignant by cell pathology & name of this beast unlike other brain tumors describes it's most eloquent location, the brain stem. Thus, a BSG. The brain stem is in the bottom most portion of the brain, connecting the cerebrum with the spinal cord. The mid-brain, pons, medulla oblongata are all part of the brain stem. With my tumor still in this area, symptoms continuing, I accept the daily challenges & there are many. The brain stem has little " wiggle room" & is packed with functions to name a few: heartbeat,breathing, swallowing, eye movement. Science 101.

I have endured 2 brain surgeries (partial resections), a full year & then some of severe hydrocephalus of the 3rd & 4th ventricles which kept me bedridden with unbearable headaches & vomiting that you actually would wish your worst enemy.

Next recurrence , I barely survived laying flat on my face, smashing my nose flat on a narrow board while getting my brain fried for 6 weeks, 5 days a week . I hated getting my radiation treatments. They became especially scary when my radiation oncologist felt compelled to inform me that the " radiation can go through 5 feet of concrete". That was a lovely piece of information I don't think I needed to hear, ya think? Everyone clears the room when hearing the machine turn on. Lucky them. I agonized over the clumps of hair that fell out on my pillow mid-way through the treatments. Now, I can just hear those of you who haven't gone through this, thinking, "What is she kidding, with everything she's gone through, who gives a shit?"
Well, let me tell you smarties, don't be talking shit unless you've been there like anything else. As I woman, I will share with you ,THIS is not easy. Bald is not beautiful for us gals. It was a constant reminder of just how sick I really was.

The next recurrence came 2 yrs. later. No surprise, the angry symptoms of the beast sharing space in my brain were back again. OK, here we go again, got to be be proactive.... BRING IT !! The Neuo-oncologists did just that it, chemotherapy is brutal, it not an easy road. I'm still fighting. I'm determined not to get beat, I have too much to live for. I'm a terrible loser. Currently, I have endured several years of chemotherapy cocktails for 2 additional recurrences . Word has it that brain tumors are the smartest dogs out there. By now I certainly agree.

I am eternally grateful for my gift of time. Although no day at the beach, it's been worth it. There have been times where I have become restless,frustrated & uncertain, even hopeless.
I think that's Ok. I suppose I'm entitled every now & then.
I've been blessed to watch my sons grow into wonderful, handsome, strong, young men.
Let's face it, beneath the every day nonsense, what else is there?

I have been busy & productive & will continue to share my personal mission & the
Florida Brain Tumor Association with anyone who's interested & needs us. The next annual FBTA brain tumor conference, " Sharing Hope: Tumor Talk" will be Jan. 21-23,2011.
West Palm Beach, FL- WPB Mariott Hotel. Registration begins, October 15, 2010 on the FBTA website. www.fbta.info
I live every day as if it's my birthday. Live loud, smile often, laugh freely...
KOKO

It Could Be Worse, It COULD BE A BRAIN TUMOR!!

21 YEARS

Could Be Worse, You Could Always Have a BRAIN TUMOR