Wednesday, July 18, 2012

Seriously?

I have a brain tumour.

I have been saying that to myself over and over for a little while now.  Ever since the doctor called yesterday morning to inform me of my CT scan results.  It looks like something called a meningioma.  Usually they are non malignant (NOT cancer).  I have no reason to believe that mine is cancerous.  It's small.  About the size of a cherry pit, I am told.  On the surface of the brain, high left side.  That's about all I was told in that call.  I mean, next steps were discussed:  trying to push up an appointment date to see a neurologist, go for an EEG, et cetera.
But I have a brain tumour.
I wasn't sure if I was going to say or blog anything about it.  But then I thought, this is a part of my life, a part of my experience, so why the hell not?  I'm not writing it for "prayers" or as part of a "poor me" thing.  I'm just writing about it because it's what I'm going through and it's on my mind (literally - the tumour is in the meninges which is the covering of the brain).
My third son is a cancer survivor.  He had bi-lateral Wilms when he was a year old.  I remember at that time thinking that I wished it was me going through it and not him.  Well, now I do have a tumour.  But it isn't cancer.  Maybe it's because of what I went through with him that I'm not really upset at the moment.
Or maybe it really hasn't sunk in and I'm in denial or in shock.
When I told my second son, he said he had mixed emotions about it.  On the one hand, he thought it was terrible.  But on the other hand, he thought it was cool.  That pretty much sums up nicely how I feel about it.  I feel terrible because I think I'm supposed to feel terrible about it.  But I also find it incredibly fascinating and, dare I say it, even funny.
I must have been away or not paying attention the day the pamphlet on "How to Feel about having a Brain Tumour" was passed around.  I spent a lot of time yesterday saying "I have a brain tumour" to myself and then giggling.  Maybe in time, when we start really getting into the nitty gritty of it and deciding what to do about it, I won't find it so fucking funny then.  But, right now, it amuses me.  And that's okay; isn't it?  There's nothing I can do about it at this very moment.  Being upset, sad, scared or serious isn't going to make it go away.  If it would, I guess I could muster up a good cry.  But it won't.  Life is chaos.  Throws shit at us all the time.  Lots of stuff we simply can't control (no matter how much we lie to ourselves and try and convince ourselves we do).  I can't, at this moment, control the fact that I have a brain tumour.  So if I think it's funny and want to laugh about it, I will.  I'd rather have a tumour and be happy than to have a tumour and be miserable.  
Either way, I still have the tumour.  
Don't get me wrong.  I'll be sad, angry, serious, scared when I have to be or when it just comes naturally on its own.  But I'm not going to force myself to be those things because that's what I think other people think I *should* be feeling.
If other people think I'm having an inappropriate emotional response, I suppose I can always blame it on the tumour.  Yes!  I have an excuse for my insanity now.  I can just be me and do my thing and if anyone has a problem with it, BAM, "I have a brain tumour.  What's your excuse?"

I guess this is the point when I should backtrack a bit and talk about how I got to here.  I mean, how did I find out I had a tumour.
Two weeks ago I had an "episode."  I've had similar episodes over the last, oh, four or five years, but I just poo-pooed them.  Basically, I was fainting in my sleep.  Although, three of the five episodes I was up and in the bathroom going pee.  All five episodes happened in the middle of the night, wee hours of the morning.
First two episodes, I'd gotten up to go and empty my bladder.  After I'd done my business, I felt "funny," so I laid on the bathroom floor and passed out.  I'd had a couple of drinks the night before and since I don't often drink alcohol, I blamed it on that.  I'm older; I don't drink much; my body must have changed and I can't handle it.  Those two episodes were over a year apart.  I pretty much avoided alcohol after that and things were going good.  Until last year.
Last fall, I got up in the middle of the night because I had cramps.  Actually, I was sick.  I had some kind of noro-type virus.  I went to the bathroom, had terrible runs.  I remember sitting on the toilet.  Next thing I remember is lying on the bathroom floor with my husband standing over me asking me if I'm okay.  I couldn't move and I couldn't speak.  Body fluids are coming out both ends:  vomit and diarrhea.  Hubby calls 911 and gets an ambulance to come for me.  He says I got up off the toilet, hit the floor, then got up again and fell again.  I hit my head on something on one of the ways down.  I do NOT remember doing it twice.
Anyways, I do remember asking hubby to help me clean up and put something on.  I was more worried about having strangers come into my home and find me naked covered in "stuff" lying on the bathroom floor than if I was sick or not.  Stupid vanity.
I'm taken to the hospital.  They do a finger prick and determine I'm not diabetic.  Give me fluids and Gravol intravenously.  Everyone figures I just passed out because I was dehydrated.  I didn't argue because it made sense to me.  Alcohol dehydrates, stomach virus dehydrates.  I wrote off those episodes as my body not liking to be dehydrated.  
The fact that I've had alcohol and noro-type viruses in the past and NOT had any episodes just wasn't that strong in my mind.
Then a few months later, on Christmas Eve, it happens again.  This time I hadn't had any alcohol and I didn't have a stomach bug.  But I did have a cold.  
What was weird about this time, though, was that I didn't make it to the bathroom.  I didn't make it out of bed.  I was sound asleep and woke up because I just felt wrong.  I don't know how else to explain it.  I just felt wrong and woke up just in time to pass out.  While I am still in bed.  
I have a needle/blood phobia.  I am prone to fainting at the sight of blood or when I have to get a blood test or get an IV put in.  That's happened all my life.  I'm not a stranger to "fainting."
The episode on Christmas Eve felt different than a normal faint.  When I faint, I remember what I was doing before, and then my memory picks up when I'm coming to.  I don't have any memories of anything in between.  But the episode on Christmas Eve, I do have memories of the "in between."  I remember seeing flashes of bright colours and weird shapes; I remember hearing a sound that I can only describe as a loud roar that sounded like a thousand people all speaking at once.  I couldn't make out what they were saying or even if they were speaking the same language as me.  And that terrified me.  I remember feeling absolutely terrified because there was all this sensory input that made no sense.  I was struggling to make any sense of it, and I couldn't.  
The colours and shapes faded to black.  The roar dulled into silence.  I remember being aware of sweat covering my body.  It felt good.  It was the FIRST thing that made sense.  I was aware of my body and aware of being in it.  It was a huge relief, and it felt really good.  So good that I felt like I was in a state of bliss.  I didn't want to move or speak.  I just wanted to stay in the bliss.  So I fell back asleep.  Next day is Christmas Day.  I feel weak and tired, but I'm sick with a cold.  I let it go as just another "sick" thing.
Until two weeks ago.  The same thing that happened on Christmas Eve happened again.  Except this time, I'm not sick.  I am aware in the morning that I feel tired and weak.  I'm weepy.  I'm crying for no reason.  I'm not sad; I'm not scared.  Tears just coming out of nowhere.  At this point I'm now wondering if I am actually fainting or am I having a seizure.  And then I'm not sure if I'd know the difference.  I'm not outside of myself when this is happening, so I don't know what I look like when it does happen.
I'm thinking about "connections."  These episodes all happen in the middle of the night.  All five episodes happened within 24 hours of me starting my menstrual cycle.  For the past five or six years, I've had horrible migraines associated with my menstrual cycle.  I'm at an age where being pre-menopausal is not out of the question.  Is this a hormonal thing?  
I figure I better call my doctor and get a medical opinion.  So I call, make an appointment to go in that day.  Doctor wants me to see a neurologist, but in the meantime sends me for blood work and schedules me to get a head CT scan done.  I get the blood work done and it comes back normal.  I expected that it would.  

I go in last week for my head CT.  I had a blast. It was so much fun.
Technician was a good looking young guy who was really nice and made me laugh (as well as I think I made him laugh).
When I got in, I explained the whole needle fainting thing, and he said I didn't have to worry because I'd be lying down when he put the needle in for IV contrast. So I'm climbing on the table and trying to get in position, and I ask him if I'm in the right place or do I need to move up further. 
He says, "No, you're perfect." Pauses a couple of seconds and follows up with "But I bet you're used to hearing that several times a day every day."
I wasn't quite sure how to respond to that, so I immediately started telling him about how I caught a big ass frog last week and frightened my boys with it.
Then I asked him if the contrast was radioactive. He told me it wasn't. I said I was disappointed because I was hoping to be able to get some kind of super power from the experience. He laughs.
He gets the IV in, gets me in position, starts the contrast going and the test begins. I had my eyes open at first, but then closed them because I could see the spinning thing and it made me a little dizzy. It was fun sliding back and forth on the table with my eyes closed ... felt like I was on a theme park ride.
So then the technician comes and takes out the IV. He asks the other tech in the booth if they turned off the contrast pump. Then he turns to me and says, "I think you broke the pump."
Other tech comes around and says all the screens just suddenly went blank and now everything is flashing and they'd never seen anything like that. Technician says to me, "You definitely broke it."
I smile and say, "See, I did get a super power! Yay for me!"


I have a really, really good relationship with my doctor.  We've known each other for over 20 years.  
I appreciate the fact that she called me on the phone with the results and didn't make me come in for an appointment to tell me.  She was there through my son's diagnosis and treatment.  She knows I can handle this.

So that's where I'm at currently.
I have decided to name my tumour "Brian."  If it's going to be living in my head for a little while, it might as well have a name.  "Meningioma" isn't a very good name.

8 comments:

  1. Wherever you are with this, and wherever it goes, we (july98moms) are with you for the ride. Love the story about the heat CT! :-)

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    1. I know I have amazing friends (in real life and online). Where do you think I draw my strength from?

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  2. Wow - glad you finally figured out what was causing your episodes! Here's hoping Brian is a quiet tenant until you manage to get him evicted!

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    1. I obviously spend too much time on Facebook. I spent a good 60 seconds looking for the "like" button for your comment. :)

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  3. A hot CT tech who looks at you and tells you you're perfect AND you broke the pump? Classic and fitting. Super powers for sure! Xoxoxo ~Jen Malcolm.

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