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 2nd leading cause of cancer death in children, ages 21 and younger. Bet you didn't know that. Here's another one, there are over 126 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? And I really don't think anyone really cares anyway. It's kinda like this; when someone asks you how you are, do you think they really want to know? Answer that one for yourself. True that. But this is my blog.

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 " an eighteen year brain tumor survivor of a not- so -well behaved brain tumor called a " brain stem glioma ". So, it looks like I am defining myself that way. But, I am a Mom,daughter,sister,cousin, friend, artist,advocate, liberal, sports fanatic .... this may be an acceptable way to look at myself from the outside looking in, maybe.

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. Real quick, 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...not one tear, 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". Another story for another late night other than tonight. There is a moral of this little ditty & it goes like this: listen to your body, no one 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 clowns insisted it was stress, "all in my head", to them that was "obvious". Let's keep this real: The reality was ,they were too busy to listen, to give a crap.... it was certainly in my head, wasn't it. Angry? YOU'RE DAMN RIGHT I WAS. Angry that my own family did not believe in 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 anyone imagine being so sick & the people you thought you could count on at a time like that were in "never-never land ", not able to hold you, to tell you you'd be OK ? Tell you they would do whatever it takes to get you well. That's what I expected. 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 Evan when the left side jerking began. I was terrified. Instinctively, I pulled him to me as close as I could. Next thing I knew, we were both on the floor. When I came back, I was very disorientated. I immediately reached for my baby. I realized I was out of commission 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. I could never figure that out, how could they not see this? Until finally a light bulb turned on. Here's how it goes. If they refused to see a very sick wife, or very sick daughter, then in their minds, it just wasn't happening. You see, 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 just good as new. Who wants to think someone they love is seriously ill anyway, right? So, an "ah ha", moment... oooohhhhh, that's what denial means, now I get it.
Interesting. Digging way down into my soul, I still can't tell you if I really truly forgive them, even to this day. The despair, isolation, loneliness, I felt still remain. 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 doubt it, 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, that was the beginning of a new & different life. Filled daily with challenges, new faces, new questions. My new acceptance. Acceptance of: No more looking for who I was then , I still work on accepting who I am now; accepting losing things constantly & hoping they just appear somewhere; acceptance of taking naps, asking for help, acceptance of the need to ask for things to be explained over & over again, acceptance that I have seizures that occur at the most inappropriate times & whenever the heck they feel like it...acceptance of well, that's just the way it is now and not too much is important anyway....

The surgeries & many treatments have left me with impairments, but I never need to be reminded how blessed I am to be surviving at all. I am still a Mom, daughter, sister,cousin, friend, artist. I've picked up a few more words along my journey: activist,empowered,lobbyist, challenged, committed, liberal, dedicated & passionate...

Here's the scoop, for anyone that might be a teeny bit curious. And for the rest of you that aren't, well sorry, you can just skip this. The tumor pathology is malignant by cell pathology & name of this beast unlike most other brain tumors describes it's most eloquent location, the brain stem. 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 3 brain surgeries (partial resections), a full year & then some of severe hydrocephalus of the 3rd & 4th ventricles which kept me bedridden with incredible, indescribable headaches and 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? Then everyone clears the room when you hear the machine turn on. Not pleasant. Then 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. To look like you're in a concentration camp in Germany, in WW2, is not exactly where I wanted to be. And of course, 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 yet again. OK, got to be be proactive.... BRING IT ON BABY!!
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 beaten, I have too much to live for. 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 do agree.

Let's pick no bones about it, I am eternally grateful for my gifts of time. It hasn't been a day at the beach, even so, it's all 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. Lets face it, beneath the every day nonsense, for me , what else is there?

I have been busy & productive & I will continue to share my personal mission & the Florida Brain Tumor Association with anyone who's interested. Meanwhile, take a look for yourself: http://www.fbta.info/ & www.fbta.info/register.html.

I have accepted my gifts of abundant extra time. Gifts must always be returned. My children, my work with the Florida Brain Tumor Association are my passion. My mission every day, is to wake up with my eyes open. My wish is to live as long as I can beat the challenges of my beast, live loud, smile often, laugh freely, live it as if every day's my birthday. diva

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

Could Be Worse, You Could Always Have a BRAIN TUMOR