Tag Archive for 'brain'

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Random questions

People are curious by nature. I personally feel its the most important part of what drives our species to survive. This is a crazy thing I’m going through and I notice people ask me questions in blog comments or on the phone that I want to answer… I don’t have all the answers I want (yet) but I feel like I can answer some of them for you guys.

Q: What does your brain tumor feel like?

Nothing. Nothing at all. I don’t feel it inside my head… its like its not there. I suppose part of my subconscious knows its there and that’s why I kept pushing my doctors for more answers to begin with, but its not like I feel a bump inside my dome. My tumor is just smaller than a ping-pong ball and yet I can’t feel it. The neurosurgeons said there are no nerve endings inside the brain, which is I guess why I can’t feel anything. But then why do headaches hurt so bad?

Q: What kind of medicine are you on?

I posted this picture on Facebook the other day… I think it sums it up: a lot. None of them are for treating the cancer yet but they are all doing something for me.

First thing is Bactrim… which is basically just an antibiotic to make sure I don’t end up with some sort of infection from the operating room. Pretty simple. Makes me a little thirsty. Big pills to swallow.

For the pain they gave me Norco. This stuff works, there’s no joke about that. I don’t like taking as much as I am but its also helping me deal with side effects from surgery and other medicines. Since the operation there is some extra spacing between my skull and my brain (no surprise to most women reading this, right?) and it makes me very sensitive to sounds, lights, screaming kids and barking dogs. I feel like I want to become a librarian or something… except I don’t like books.

Then there’s Decadron… which is a steroid to help PUMP… *clap* *snap* ME UP! Actually no, not at all. Of all the medicine I think I hate this one the most. It gives me really terrible cravings for things like a smoothie or Chicken McNuggets or something else totally weird. I become a fiend. I need it, need it, need it. I’m like a pregnant woman. It also makes me bloated, which I really hate. I drink tons and tons of water and drinks all day and I feel like a balloon swelling up. This steroid is actually to reduce swelling in the brain from the surgery and from the tumor itself. The amount I’m taking of this is slowly dropping… and will eventually be gone.

And then Keppra, anti seizure stuff. I have noticed my seizures coming less frequent, but when I do have them I freak out a bit more. It was a lot easier thinking it was just a panic attack. These are pretty large pills too and they also make me thirsty. Just about everything I take makes me thirsty.

There’s a few other things I’m on nothing really worth mentioning… stuff to help with the bloating, Omega 3′s, mushroom extracts… etc. I’ll discuss that if anyone brings it up.

Q: How long have you had your tumor/cancer?

I don’t know. The doctors don’t know. Its one of those things they can guess about but does it really change anything? It would be easy to have had an MRI three years ago and not see it, then see it today. Like a before and after picture. Then I know it took three years to grow… but I don’t have that luxury.

Knowing what I know now, I can reflect back and notice odd things and try to guesstimate. Like the feeling of a lightning bolt echoing through my body, or strange pressures I would feel behind my left eye. But don’t we all have those short, insignificant experiences we just ignore? Scary thought, huh? I’m not saying everyone has brain cancer… I’m saying listen to your body. Don’t ignore it… even if its just a subtle hint. And your doctor won’t pay any attention to it unless you do so be an advocate for yourself.

Q: How did you get your brain cancer?

This is something I asked the doctor myself. You wanna know the shitty answer?

Sometimes its just unfortunate luck.

Ain’t that some bullshit.

I think about it every day now. Do I hold my cellphone on that side of my head? All my electronics charge on the left side of my bed while I sleep. I sleep mainly on my left side. I have an extra dental filling on my left side. Is it something in my diet? A million questions all a little late.

Q: How do you feel in general?

In a single word: “irritable”. Everything from the surgery recovery to the medicine just makes me feel like I’m walking on eggshells all the time. I hate it. I feel bad because I take it out on my kids, my wife, my family and friends… and yet I honestly have no control over it. I have to pause and remind them that I love them and that I don’t mean it. I’m like Dr. Jekyll and Mr. Hyde. I hate it.

Q: What have you been doing to pass the time?

A bunch of nothing and yet everything. I love spending time outside in the backyard. I’ll have a cup of tea in the morning and just listen to the birds chirp. I used to think birds chirping was stupid and annoying, but I love it now. I enjoy feeling the sun on my face. I love going on a walk with my wife around the block every night. We never go the same way… I don’t want a routine. I just want to be outside and breathe fresh air and talk to my wife about everything and nothing all at once.

I find myself reading Facebook a lot. I never really did before. I love seeing what my friends are up to and seeing that everyone is doing well. Knowing that my friends and family are healthy and living life is something I didn’t ever take the time to notice. I know why people love Facebook drama because it makes everything seem so important… but no drama is so much better.

And as you can see I blog a lot now… way more than ever. I have this crazy story to tell and still maintain the capacity to share it… so that’s exactly what I’m doing. I know there are other people out there in my situation, or worse, or better, or maybe not in my situtation at all… but they are curious by nature and have questions.

So I leave you with this: if you do have questions… ask away.

I’ll be here.

Time to get started

I’ve been in such a holding pattern. It seems like everything is just waiting on questions to be answered… but today… that started to change.

We finally got a call from the Treatment Center. This is the most important call my entire family has been waiting for. This is where plans get formulated, where words become actions and when we start putting one foot in front of the next. I feel like I’ve waited a month for this call but its only TUESDAY. Its like time has suspended itself and I’m orbiting some non-existent planet. Everything used to be such a routine but its not now… its all flat. It makes hours seem like days and days seem like weeks.

So Friday at 2:30pm we visit the Treatment Center… which of course feels like forever away but at least I have a goal… a point of focus… a light at the end of the tunnel. Something to keep my eyes on. I don’t know what to expect when I get there, but I’ll have a lot of questions and be looking for answers. Its time to get this party started.

On a personal note… I don’t sleep well at night anymore. At first I slept a lot but not so much now. I can’t tell you if its because of the medicine or the gash on my head or the entire situation or maybe its EVERYTHING… but I really don’t sleep now. In between the moments I drift off before my wife so lovingly takes the time to wake me up and give me my meds, I have terrible dreams.

They are very lucid… in fact I’m pretty sure my eyes are open. Its hard to close your eyes once you know someone has been poking around inside your head. And that’s exactly what is messing with me. I dream parts of my brain are being broken away and I start to lose control of the right side of my body. I wake up in cold sweats and I start feeling my face and my arms and moving my legs around. I need to reassure myself I’m still moving and I’m in control.

I start asking myself silly questions and mumble words and make all sorts of weird expressions just to make sure I can. I hate sleeping now. When you’re being told by a surgeon that you’re about to go to sleep and when you wake up you might not be the same person… it really sticks with you. I know it didn’t happen to me, but its a thought I still live with.

I imagine it would be easier to think I was just having panic attacks.

Ignorance: is it really bliss? I suppose sometimes it can be. But other times it might kill you.

I refuse to be ignorant. Friday at 2:30pm is when the party starts and I get my life back. Once I know more I’ll be able to build my life routine again. My new life routine… part of which includes kicking lots and lots of ass. I say that with sarcasm and humor… but seriously. I need to kick this things ass.

I need some damn sleep!

The first week of the rest of my life

April 21, 2011. The day my life changed. So many things have altered my life over the years, but nothing like this.

Every day our experiences and interactions with people nudge us around in this world. Small adjustments here and there, some stronger than others… some we don’t even realize. They push us ever so slightly that most of the time we don’t even recognize it.

But sometimes… just sometimes… something so unplanned sneaks up on us and stops us in our tracks. Your life is literally ripped out from underneath the cozy, warm footing you had it resting on… de-rooted, destroyed, mangled and thrown back in your lap. This is sorta what April 21, 2011 was for me.

Last week was a roller coaster. I went from knowing nothing, to knowing something, to being in brain surgery in just a few days. Then I spent the greater portion of the week waiting to hear how bad it really was! All the time I had a huge gash in my face and a hole in my skull I was trying to recover from. Its crazy to sit here and think of it like that, but thats what happened!

And then the news. Stage 2 brain cancer. I can fight it. I will fight it. Here I am.

A normal Sunday would have ended hours ago. I would be asleep, waiting for my alarm to go off and bolt out the door for work. Coffee today? Well if I need gas no time for that. Shit my car is dirty. Damn did I forget to shave? Fuck I’m pretty sure these socks don’t match my pants.

This was my normal day, my normal week, my normal life. I thought this was all important. I mean, don’t get me wrong… it WAS important. But not really.

This week is different. Imagine someone took your entire life, put it in a single box, mixed and jumbled it all up and handed it to you and said “now do it right”. What would you do? That’s where I am today.

I’m looking forward to hearing from the Cancer Center. I mean, not really… I’m scared to death. But I know I need to talk to them. I know I need to plan our attack. I’m just afraid. I’m really, really afraid.

I’ve never been involved with cancer patients because they scared me. These people are so full of hope and dreams and yet they look like they’re dwindling away; grasping to a single last thread of life and with the little energy they have stored in their souls they manage to smile at you. How can they do that?

You know how they do it? They’ve had their life handed back to them in a box.

I am this person now. This week is when I put the first step forward and never look back. Every decision I make from now on is about what matters. Surviving for my family… surviving for my friends… and surviving for myself… and in true perspective, appreciating what really matters.

Life.

So I have brain cancer

I think that’s a strange topic to write about. In fact, I know it is… it makes my heart flutter to write it, and read it, and think about it.

Saying the words “I have brain cancer” is probably the most terrifying thing I’ve ever had to say. I tempt anyone to say that out loud and try not to cringe at the thought. (don’t really do it, people next to you might freak out)

Although, it does come with good news. I have Stage 2 cancer, which is sooo much better than say, Stage 3 or 4. You know when you hear about someone who breaks their arm and the doctor tells them “of all the breaks, this is the best to have”… I’m sorta in that category. The team of awesome people I have working on my side want to avoid more surgery and focus more on radiation to shrink it. I like that idea; I didn’t like them poking holes in my head anyways.

It’s slow moving, I’m young and healthy, we found it early and I have a lot of time and options.

I have a lot of time and options. I love saying that.

I was scared to death to have the doctor call me and tell me I needed to be back in the operating room immediately just to save my life for a few more months. This is like a second lease on life.

When I heard the news I literally broke into tears. I cried the most awkward cry ever because it was such a build up of so many emotions and then this wicked cut on the side of my head made it hard to cry, too. It felt so good to cry though… I really, really needed it.

I haven’t had time to absorb it all yet, its still sorta hitting me in ways I can’t describe. Its been literally just over a week now since I found out I had some mass inside my head. Now I’ve been through motherfucking brain surgery and know exactly what my enemy is. How does anyone absorb that in a week?

One thing I notice is I get really tired sometimes for no reason and I just want to sleep. Like an old man, I wake up to eat breakfast and then its time for a nap again. I don’t know if its the medicine or the surgery or both or nothing.

Sleeping is great. Sleeping is awesome.

I always think I’m going to wake up and its going to be some terrible dream that I’m finally going to snap out of. It doesn’t happen though but it gets easier to digest each time. There’s a mental point you need to be at when you finally square up to any conflict; whether it be someone at work, an argument on politics or even cancer… you have to finally stand face to face with it and tell it to just “FUCK OFF”.

So here I am cancer. You got the first move on me when I wasn’t expecting it. But I have family, friends and a lot to live for… so you fight as hard as you want but I swear its not going to be an easy fight against me.

I’m an asshole, I’m stubborn, rock-headed and I don’t like to lose. This is just the beginning and I’m not giving up now or ever.

Things happen for a reason, sometimes years before the reason ever manifests. I started this blog along time ago because I felt like I had a story to tell people. Sometimes I did, sometimes I didn’t. I filled it up with stories of my gaming and programming and other random shit but I finally found a purpose for it.

This blog is now my battle diary and this post is my declaration of war.

I’m writing this now to let everyone know I refuse to take this laying down without a fight.

I will not be a cancer victim; I will be a cancer survivor.

Home again

I wasn’t sure if I would be here again, but here I am! I’m back at home again, surrounded by friends and family.

I honestly can’t believe the support I’ve had. People have literally poured out their hearts to be here for me. Even people I don’t even know on the internet took time to respond to my post and send me best wishes. I want to thank every one of you. (Even the smartass responses that gave me a good laugh… I needed them)

When something like this happens to you, you literally lose grip on what you thought was reality. What you think is life, and what you think is important… it changes. For me it was the faces of those close to me that I couldn’t stop thinking about. The smell of hugging my children, the taste of kissing my wife’s lips. Even the simple handshake from one of my close friends.

Moments that mean something.

The surgery didn’t go as planned. They needed to get me properly breathing while I was under then wake me up so I could respond to them while they mapped out the speech control portion of my brain. I guess that didn’t work so well.

They ended up doing just a biopsy; taking a small portion of the tumor out to test and check exactly what its made of (my one buddy keeps telling me its a Skittle I snorted when I was a kid).

I have a wicked scar and my face is pretty swollen. The surgeons followed my hairline on the left side of my face… the cut is about 7" long. I’m pretty sure they peeled back away near my eye as well because that’s all black and blue too.

It hasn’t even been a week yet since I learned I had a tumor… that is insanely fast. The next step is to get the lab results back and see exactly how to proceed with taking care of this parasite inside my brain. I don’t even want to assume anything, I’ll just wait until I know for sure.

I’ve been working on this blog post for like 2 days now, its been a lot more difficult to sit in front of a computer. I don’t know exactly how to explain it, but the screens are just too much right now. I’m glad I’ve got my smaller laptop to use, it doesn’t affect me as bad.

I want to talk my wife into getting me a XOOM so I can still keep connected with people, especially with the frequent doctors trips I’m going to have in the near future. Its all about what we can afford and I’m sure the hospital visits will be costly enough. But it doesn’t hurt to ASK! Open-mouthed smile

Thank you all again for the amazing support. I want to type that over and over again. I will keep everyone posted on my progress!

Here’s a couple pictures from me coming home and getting my haircut balanced out:

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Surgery update

Thank you all so much for your kind words… it really does mean a lot. I’m not just saying that, I was crying reading these responses.

The surgeon visited me about 10 minutes ago… they now decided to keep me awake during the surgery. I guess since so much of it is on my speech center, they want to check each area and see if I can still speak, count and recognize shapes.

This is bittersweet. I know its for the best but I’m still really scared. I wanted to go to sleep and wake up with everything finished.

I haven’t eaten since 10pm last night, surgery is scheduled for 6:00pm.

Again, thank you all.

My brain surgery

Thursday was a regular day. I woke up at 3:30am to get ready for work, knowing I had to be there early because of a meeting at noon. At this point the only worry about my day was how tired I might be in the meeting… but nothing a cup of coffee couldn’t remedy.

My meeting was at noon, planned to last 2 hrs then I had a haircut appointment at 3:00pm. After that was a 5:15pm doctors appointment for a follow up to an MRI I had last week. I was looking forward to getting home and seeing my kids, then playing some Portal 2 co-op. This was a pretty long day and I knew I would be tired, but I had a 3 day Easter weekend to recoup.

I went to work for a few hours, traveled to the meeting where I dozed in and out (damn coffee!) and left as soon as it was over… no time for corporate chit chat peeps… I got plans! I made it to my hair appointment just a tad late but we were done by 4:00pm. My doctor is right down the street from where I was, so I called them to see if I could come in early. YES! They said no problem! I might get this day done quicker than expected.

I was visiting the doctor for a follow up to an MRI, I should be in and out quick and off to see my family. I didn’t think much of it because I was the one that requested the MRI, not the doctor.

You see about 4 months ago I ran down the stairs and got really bad lightheaded feeling. It started as a normal lighthead spell, but stayed for a good few minutes and was much more intense. I felt like I was going to pass out. I eventually got over it and just excused it to the fact I had been out drinking the night before and never thought about it again.

About 6 weeks later it happened again. Same scenario about running down the stairs, but this time I hadn’t drank anything the night before. I again just dismissed it. I’m 29 and everything is fine… I just need to exercise more often.

So about a month ago, on a normal Wednesday like every other day, I had just left work and was trying to make a left at a stop sign to a street that doesn’t stop. I’m looking both ways trying to find my perfect opportunity and suddenly I get tunnel vision. I can’t gauge the cars, nothing makes sense, the voice on the radio is jumbled up and everything started to spiral around me. My right arm, leg and my entire chest started tingling and it started to remind me of a stronger version of what I had experienced a few months ago. You can think of these spells as “waves”, they start weak but get stronger then eventually taper off. But now these waves were coming back to back and wouldn’t stop. I had about 5 of them before I was coherent enough to drive again. All I wanted was to get home.

I started driving again and about 2 minutes later it all started again. Wave after wave, never ending. I didn’t think it was an emergency so I called my boss, who I also think of as a friend. I live 60 miles from home so calling my wife wasn’t an option, it would take her at least an hour minimum to get to me. I was just around the corner from work so this made the most sense.

He shows up and immediately started driving me to an Urgent Care facility near my house. Although these spells kept coming neither of us thought it was an emergency and was worth it to drive closer to where I live. Being closer to home is always the best feeling.

We get to the Urgent Care and my wife is waiting for us. They send us to the ER down the street where we finally check in. After an hour of waiting, blood tests, EKG and other test they send me home with a white pill for anxiety and tell me I was having a panic attack.

Bullshit! I know myself. I manage stress well. I know how to organize my day and methodically go through all my responsibilities without allowing myself to get overwhelmed. But the ER doctor insists I was having panic attacks. He gives me printouts of all my reports and tells me to give them to my primary physician.

I set up the appointment with him, hoping to get real answers, but when I finally meet with him he jumps on the anxiety bandwagon. Prescribes me a bunch of pills, schedules me a follow up in 3 weeks then sends me on my way.

I’m furious at this point. You have to understand… I eat very healthy: loads of fruits and veggies, organic foods, no sugars or sodas and I drink water and green tea all day… and I HATE taking pharmaceutical pills.

But if it is what hes telling me, I better take this medicine. So a few days go by and I’m still getting these attacks. On average I get about 6 to 10 a day. But after that day I went to the ER, they changed a bit. My right arm would get heavy and numb, along with my left leg. I get a weird taste in my mouth that I can only describe as a metallic flavor. But the weirdest shit of all is the right side of my face would smile uncontrollably. I felt like Two Face from Batman. In public I tried to cover it up by smiling the rest of the way and cracking a quick joke to laugh at, but I had a hard time articulating sentences or even comprehending what others were saying…

So I live with it for the next 3 weeks until my follow up doctor appointment. When I get there and tell him they haven’t stopped, he just wants to change my medicine. I beg him for an MRI on my brain to which he finally agrees. About a week later I go in for the MRI and start the waiting process for the results.

That brings us up to Thursday.

When I walked into the doctors office and checked in, I knew something was wrong because the ladies behind the counter all started getting mad at me stating they had been calling me but I didn’t ever answer. Not sure what number they had but they NEVER called once.

I sat down in the waiting room and messaged my wife something like “I’m worried, something doesn’t seem right”. My feelings were spot on. Once I got into the doctors office it went something like this:

Dr: Hey, how are you?
Me: Good, still dealing with this.
Dr: So I got the results… things uh… they didn’t come back good. They… uh… they found something
Me: …okay…
Dr: There is a large, aggressive mass on your left temporal lobe, sitting on the part of the brain that controls speech.
Me: …okay…
Dr: I recommend going in for another MRI with IV Contrast and speaking with a neurological specialist…. blah blah blah …

At this point I realized my doctor was out of his league. He had no idea what he was talking about, didn’t even have someone to recommend me to. I started to zone out; thought about my life… my family… my children… how my wife would take it.

Fuck.

It hadn’t even sunk in that this was happening to me. It felt surreal. A dream. A terrible dream.

I called my wife, my parents and informed my boss I wouldn’t be in tomorrow. Then I sat in my car and cried.

I finally drove home and by that time everyone was there waiting for me and we just spent some time together. We discussed options, doctors, plans and anything else that came up. I felt emotionally drained and finally went to bed.

I woke up early and my first thought was “a dream?”. So when I went downstairs I didn’t bring it up but the first thing out of my wife’s mouth was “I’ve been on the internet all night and doing research, I just got off the phone with a neuro surgeon, he says you should have never been sent home from the doctors and you need to go to the ER right now”.

Not a dream.

So that brings us up to yesterday. I sat in the ER for 8 hours waiting for the neuro specialists to review my MRI and wait for a room to open upstairs in the neuro critical care area.

The plan is to have a crainiotomy, open a large portion of my skull, and remove the mass as much as they can. After they have it out they can test it for cancer, but until then it remains unknown. The risks include being paralyzed on my right side (because the brain sides control opposite sides), speech cognition and my ability to speak issues, infection or even death.

UPDATE: Actually just after I typed that last paragraph my surgeon just visited me. He said the tumor is sitting 95% on the speech area and he’s worried that if he takes out too much I wouldn’t be able to speak at all. He wants to take out as much as he can but with the least complications. Once we know what it is, the rest might be able to be treated with radiation.

The last 2 days have been a really wild ride. I’m sitting here in my bed, just got back from my second MRI and waiting to hear if my operation will be today or tomorrow. I’m on the standby list, so they won’t let me eat just in case I do actually go in today.

Its scary. I don’t want to lose my ability to speak or understand people. I want to be able speak to my children and give them advice, have conversations with my wife, or even tell jokes. Its fucking scary.

I don’t know why I’m sharing this… I feel like I want to get all my thoughts out before I might not be able to anymore.

I hope this isn’t my last time communicating, but you never know. I’m keeping my thoughts positive but remain realistic in my approach.

If I come out a different person, I want everyone to know that who I was, was a good person. I may speak harsh, tell crude jokes or even give you a hard time. But deep down I care about everyone and wish the best.

I love my family, my friends, my parents, my brother and sister and my children. I don’t think they know how much they mean to me.

I posted this on Twitter last night, so I’ll share it here too: I have no idea how things will turn out, so I’ll leave you all with this…

thumbs up

see you guys on the other side :)