Tag Archive for 'treatment'

Looking ahead

I need to write this as a reminder to myself. Sort of a written promise not to compromise… not to give up and not to lose track of what’s important. I have lost track of what’s important, and THAT bothers me.

I feel like in the recent months I’ve been living my life with my head down. I’m only looking at my feet… watching them slowly shuffle down the sidewalk. I haven’t bothered to look up to see where I’m going. You know what’s really shitty about that? I’m not that kind of person. I’ve been a person that has a task, but looks way down the road… even standing on my tippy toes and using my hand as a sun visor so I can see further, just to make sure when I finish my task it will be beneficial to the big picture. I like to plan as far ahead as possible and ensure each step takes me in the right direction.

Its like when you’re driving down the freeway and see rain in the distance. You’re driving in perfectly sunny weather but you can see that a storm is a few miles off. You think to yourself, “am I going to be driving that far? Yes I am. I’ll be on this freeway for another 30 minutes and surely I’ll be in that weather.” You look at your back windows, make sure they’re rolled up, try to remember if you have a coat and umbrella in that trunk. Check the sunroof. Glance at your wipers. Everything seems in order here.

Stop and think about that. I’ll wait.

Are you still driving? Yes. Did it take any more effort to plan ahead? No. You’re still driving just as you would have done even if you didn’t look ahead. But now you’re that much more ready for the storm. Your task at hand is the same but you’ve made minor changes to ensure success in the future. But you have to know where you’re going to make those decisions.

Walking through life with our heads pointed at our toes is easy, and if you think about it, so is looking forward. But you need to look forward.

But knowing what direction you’re moving is different than knowing where your destination is. You can’t get to the moon by aiming “up”. And shooting for the sky will only disappoint you when you realize the “sky” is just a direction. You need a goal. It has to be ingrained in your head like GPS coordinates.

So lets bring this topic full circle and back to why I brought it up. I think I might have mentioned once or twice that… well, cancer sucks. And I mean that literally and figuratively.

Cancer sucks the life out of you. Happiness, energy, motivation, that feel-good feeling. All of them whither away. I stopped looking at my life on a macroscopic level and started looking at my days in microscopic form. How do I feel this hour? How am I feeling now? Am I happy? Do I need to throw up? How am I feeling now? I was like the fucking Verizon guy but instead of “can you hear me?” it was “how am I feeling?”.

The big picture blurred away and blended in with the horizon. In my mind it didn’t exist anymore. I only cared about the “now”.

Until… now (you gotta admit that’s pretty funny… irony at its best)

I can’t tell you why or how, but over the last few days I’ve started to look up again. I don’t know if its because I’m starting to see the light at the end of the tunnel with my treatment, getting out of the house more, the fact I’m starting to feel better in general, or something else I’m completely aloof to… but something has changed.

That’s why I’ve changed my mind. The statement “cancer sucks” isn’t fair. It isn’t fair to those who don’t let it win. Let’s refrain from defining what cancer does and say, “cancer can suck… but only if you let it”.

Yes there are days it will suck the energy out of you, it will suck the motivation out of you, and it will suck the happiness out of you. Cancer will even literally suck the life out of some people. People will lose the battle. But lets honor them by not looking at our toes but by looking forward to where we are headed.

So today, cancer sucks. But way out there, on the very edge of what I can see in my future, it does not suck. And that’s where I’m headed. So I need to make changes to my today so that tomorrow I’m closer to where I want to be, and not somewhere I hate.

Making that decision isn’t easy. Shallow words and empty promises have no roots. They won’t weather a storm, they won’t last and they’re a waste of your time. You have to really want it. You have to NEED it.

Have you ever been pulled under by a wave; twisted, turned and pushed into the dark of the ocean? I have… many, many times (I think it comes from being born and raised in California). Once the wave has passed there is a quick moment of silence… followed by panic. At this exact moment your mind locks on to a single goal… “air”. Nothing will stop you. Your goal has become the single most important goal ever defined in your life. The salt water you were so worried about getting in your eyes is now nothing. Your eyes are wide open, pupils dilated and searching for a small glimmer of light. The seaweed you avoided touching earlier is no longer a threat; you press your foot through it to find the solid ocean floor and press yourself up to the surface. Kicking your feet with every ounce of energy, your muscles burning from the lack of oxygen you struggle to the surface.

In the end, when we reach our goal… that first breath… it is the single most refreshing breath we’ve ever tasted. Every goal in our life needs to share that same dedication.

Whether it be happiness, success, health, fame, fortune or whatever else you’ve set your sights on… want it like you want to breathe. It cannot be an option.

Right now my goal is to be happy and healthy. I want to smile more often. I want to be outside and smell the fresh air. I want to eat right and live right and do whatever it takes so that 10, 20, 40 years from now I’m still happy and healthy. I want to be successful in my career, which means I need to get back to work (which will only happen when I’m healthy again). Every accomplished goal is a building block for the next goal.

So right now… uncross your feet and take your hand off your chin and think about your goals. Sift out the unimportant, egotistical nonsense and focus on the goals that matter. Take a deep breath and prepare for the next wave. I can’t tell you when its coming, but your goal isn’t an option.

Reach it.

Okay stop being so quiet

“So like… where have you been? You don’t call or write anymore. You don’t say hi. I feel as if we’re drifting apart”.

That’s kinda what I imagine everyone is thinking right now. Oddly enough, I didn’t realize how many people were following my blog at the time I stopped writing. In all truthfulness, I couldn’t figure out why people bothered reading about my shitty experiences, but then I started to realize that whatever compels people to read it doesn’t matter… what mattered was the feedback I got. Genuine, sincere caring from friends, family and even strangers.

I thought for sure my blog would fall into the out-of-sight-out-of-mind category when I stopped writing. Like… of course people say stuff when I post something new, but they won’t realize when I stop. Yea… WRONG.

So why don’t I write? Heh, your guess is as good as mine. Its not like I don’t have the tiiiiiiiime. I have too much time. Time is really all I have. Free time is sorta like candy: we all want it, we all crave it. And then when its Halloween and you get a metric fuck-ton of it, you realize how much you actually hate it and you just want to pawn it off to your neighbors and people at work. Free time starts to feel like emptiness. You feel like you’re on pause and the rest of the world is fast-forwarding passed you.

I see days go by in a blink. Life is busy, like a nest of bees. If you were to stare at it, it would look like a single, organic machine flowing in perfect, fluid motion. Like every movement belonged there. But if one bee were to stop moving, you’d noticed it. It would look out of place and wouldn’t blend in with the rest of the product. I feel like that bee. And when you’re that bee, a single blink means a hundred things have change. There are days I wake up to my son giving me a hug and a kiss before school and then I blink and he’s home telling me about his day.

I mean, I sleep a lot. I’m run down most of the time. I don’t want to get all ‘woe is me’ and that shit, so I won’t. But chemo and radiation knock you the fuck out. It takes a toll on you, man. Some days it just feels like game over, man. Game over!

But then other days are like WHOA HEY WHAT’S UP PEOPLE WANNA HANG OUT? WE SHOULD LIKE TOTALLY DO SOMETHING! And then I realize its Tuesday and everyone is like “fuck you” because its 11pm and they want to sleep before work.

I’ve explained it with this metaphor: Its like push-starting a car. It takes a lot of effort to get me going, but once I’m up, out and about, I just want to keep going because I’m afraid to stop because I know I’ll be dead in the water again.

And again I find myself writing and ranting about unimportant fluff. I could probably write 3 pages worth of uninteresting crap. I should totally get into politics.

So here’s whats going on with me.

I started radiation a few weeks ago, and on that same day a started taking chemotherapy pills. Oh and if you’re curious what chemo tastes like, it tastes like dirt. Yes, dirt. The price of a months worth of chemo is north of $16,000… and yet they couldn’t make it taste like anything other than dirt? I mean, its not like I suck on the damn things. But its a capsule and when you put it in your mouth you taste the capsule, right? And it tastes… like… dirt. Its nasty bro. For that much money they should dip the fucking pills in Krispy Kreme glazing.

So I gotta take my pills on an empty stomach, so I just do it when I wake up. Then I gotta wait about an hour before I can eat. But the chemo makes me really nauseous so I have another pill for that called Zofran. Actually its a tablet that dissolves in your mouth. And THAT tastes like Flintstones Vitamin Strawberry flavor. In other words, barely better than dirt.

Its like… everything I take has a side effect that I need to take another pill for… which has its own side effect… that I have a pill for. Its like a god damned cat chasing his own tail. That is the single, most frustrating part of this entire process. Here’s a larger picture of it all:

I have brain cancer which gives me seizures with a possibility of death. I take chemo and radiation to help with the death part. Chemo makes me sick to my stomach and kills off my white blood cells. I take Zofran to help with nauseousness. Zofran gives me headaches so I have to take Advil/Tylenol. Advil/Tylenol are hard on your kidneys/liver. To help with the low white blood cells, I take Bactrim. Bactrim makes you constipated so I have to take Colace. And whats the side effect to Colace….? Mother fucking NAUSEOUSNESS! Yay! Free parking! Do not pass go! We just did a circle! FUCK CANCER! And I didn’t even start on the seizure medicine circle of doomity doom. I won’t bother you with it, though.

So anyways. Where were we? Oh yea, so treatment. So radiation is pretty interesting. I’m doing proton radiation which means they are actually shooting radioactive protons particles into my brain. In my case, from 2 angles. One is straight through the left side of my face (kinda like directly at my left eye) and the other is from the side of my head. The hair on that side of my head fell out and my left eye is swollen, red and irritated. And its constantly watering.

Here are some pictures to help you understand what’s going on:

This is my torture radiation chamber. What you see on top is where the radiation is shot from. The entire circular part can rotate: that’s how they’re able to aim it at different angles. I, of course, lay on that oh so comfy looking flat board in the middle. In case your sarcasm detector is broken, I was laying it on pretty heavy right there.

And this is me laying on the table. Because they use X-rays and all sorts of interesting methods of lining the proton beam perfectly at my tumor, they don’t want me to mess that all up by moving around. Sooooo… they lock my head down with that mask. Its a custom made mask so it fits my face like a glove. And by ‘like a glove’ I mean holds me to the table like I’m about to get an anal implant from some aliens. I can’t move at all. Hell, I can barely talk.

Waaah waaah waaahh boo hoo! I don’t want to sit here and be Mr. Downer on the first blog post in a long time, so lets look at some of the positive stuff:

As of today I’ve completed 18 out of 28 radiation treatments. Which means I’m almost done with that part of this battle. Chemotherapy will also change from a daily pill to a monthly pill. A few weeks after radiation has finished hopefully my hair will start growing back. If not I’m gonna end up having to invent some sort of crazy new hairstyle. Also, my radiation crew is really nice. And by ‘my crew’ I mean the guys I see every weekday. I always visit the same room and see the same guys. Its cool because you kinda get to know them and they make the experience not suck as many balls as it really should. They even let my family visit the room, check it:

This was of course before I shaved my head because I was losing so much hair. It was creepy pulling out clumps of hair every time I took a shower.

I think I’ll leave it at that for now… save some words for the next time I write. But before I go I recommend everyone read this comic I stumbled across. I posted it on Facebook a while back, so it might be a repeat for some of yous guys. Clickith thy mouse here.

Also, if you can recommend a hairstyle that compensates for the left side of my head being bald, but doesn’t make me look like an MMA fighter, please advise. I might need it. And no I’m not going to shave it all off. My head is so white I’ll look like a cue ball with legs.

The next chapter

In my previous post I mentioned our visit to the radiation doctor, so I’ll skip that for now and briefly talk about our trip to the east coast.

Before we found out about my cancer, we had purchased plane tickets to visit family in New Jersey for the week of Memorial Day. Since my surgery we’ve asked each doctor if I could still make the trip. All of them said yes and highly recommended it. They said getting out of the house would be good for me. To be honest I was a little hesitant… in fact I almost didn’t go.

Everyone knows when you don’t feel good the best thing you can imagine is just being home. You feel comfortable, you know where everything is… you just feel “right”. Anywho, my seizures is a great example of NOT feeling right (so is explosive diarrhea, who wants that shit? ANOTHER PUN!).

When I have a seizure I get really tired. Sometimes the tiredness last for just a few minutes, other times several hours (that’s where my spontaneous naps come from). I felt like I might be a burden on everyone and didn’t want to ruin the trip.

It turned out to be the complete opposite. Everyone understood my situation and accommodated me perfectly (my wife even tried to get me a wheelchair at the airports– what the hell?). Needless to say, we have some amazing friends and family on the east coast that were totally sympathetic. They had a BBQ on Memorial Day which I totally missed half of because I snuck away for a nap. It felt awkward when I came downstairs but they acted like it didn’t even happen. Or maybe I’m like a ninja and they didn’t notice me? I guess we’ll never know. *throws smoke bomb and disappears*

So during our previous trips over there we did a lot of train rides and walked a lot in NYC. This trip we drove everywhere. Its definitely not as easy but it makes for a quick retreat when I’m not feeling well. I could go on and on about our trip but to make a long story short… we had a great time. It was a healing process to me. At the start of the trip I was depressed and dealing with insomnia, but by the end I felt so much better and was sleeping through the night.

While we were there we gave my medical profile to John Hopkins Hospital. Its one of the best (if not the best) cancer centers in the US. I know its on the east coast but that’s not even an obstacle to us. If someone told you “your health is going down the shit-hole” wouldn’t you do anything to anything to prevent it? Damn straight I would.

But I’m not gonna lie, it was great to finally get home. Not that I wanted to leave our family and friends in New Jersey, and the great food, and the beautiful city view… but the plane rides were ridiculous. Sitting for 6 hours in a sardine can is miserable. Plus we had so much luggage to cram into our car; even that wasn’t comfortable. I didn’t even unpack the following week. I just slept and recovered from the flight and drive home. Plus I waited long enough that my wife ended up unpacking for me :) Score one for Brandon.

So lets go back and talk about the “fun” stuff. (note: use of the word “fun” might not be applicable for all context of the following information)

As I mentioned already, we finally visited the radiation doctor. So lets summarize all the doctors and what their views are about having a resection (removal of tumor… a.k.a. brain surgery):

  • Neurosurgeon – Put the ball in my court about the resection, he wants me to make my own decision
  • Oncology (chemotherapy) – Normally recommends resection to make chemo more effective
  • Neurological Medicine – Doesn’t care either way, just wants to find the right dosage of medicine to prevent my seizures
  • Radiation – Also recommends resection to make radiation more effective

Here’s something I’ve learned about brain radiation: to reduce the chance of having dementia later on in life, you can only have brain radiation ONCE. Dementia? Seriously? I mean I guess I shouldn’t be that worried about it. I mean… I’m not going to know I have dementia, my wife will be the one dealing with it ;) . But in all seriousness, that freaked me out when he told me that. And even more scary, once you have radiation the brain creates scar tissue. Scar tissue then makes surgery later on much more difficult. What the hell? Here I am set on the fact I don’t want my noggin sliced open like a watermelon (a.k.a. bran surgery) and then I learn this shit.

Basically… if I go with only doing radiation and chemo and that doesn’t work… I’ve screwed myself. So that means I only get one shot in making the right decision. But when I told my radiation doctor that I was really hesitant about having a resection done, he recommended a Functional MRI to show the Loma Linda tumor board. Functional MRIs, or fMRI for short, is basically a normal MRI, except it takes like 5x longer and they ask me questions during it to see what part of the brain lights up. Its a nifty way of mapping out brain areas to see if resection would be worth it.

My fMRI is scheduled for this coming Wednesday. Bummer… I just finished bitching about sitting in a sardine can for 6 hours, and now I find myself going into another one for 90 minutes. And the worst part is this sardine can doesn’t have a bathroom or women serving me drinks. I guess this falls in the category of “it can always be worse”. Anyways, once that’s done the tumor board reviews it and we start the next chapter: treatment. I’m scared and excited. Like 50% scared, 50% excited. Well, more like 60/40. Maybe more like 70/30. I don’t know… 80/20 maybe? I’ll think about it and get back to you.

On a more personal note, I’ve been sorta scared to blog lately. I’m not sure if its the medicine or the cancer, but I’m having a hard time talking and writing. I’m mixing up words, saying sentences backwards or forgetting words and all kinds of weird stuff. Here’s a scary fact: since I started writing this blog post I’ve had to ask people about twelve times to help me remember a word. Scary huh? I really hate it because I’ve never been this way. I hope its just the medicine.

My medicine doctor did change my prescription recently, and I feel it was for the worse. I went from 2 seizures a day to a seizure every 2 hours. It was never this bad. When we called the doctor about this, all she did was up the dosage. I want my old medicine back, dammit! Everyone around me pretends like its not happening. I’m happy they’re supportive like that but I recognize it. I probably notice it more than them because we’re our own worst critic.

If its not the medicine then it might be the crain bancer giving me drain bamage :(

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!