Update! #4

Hi all! This is my most recent update for more information on the modified Atkins Diet and getting off anti-epileptics see Dr. Kossoff's site here. Also, check out ketones and how they can potentially at least stave off cancer cells. See this article regarding the ketogenic diet in mice with glioma-based tumors. Interesting stuff I must say. Let me know what you think!

My excuse for an update: new mic

This is my most recent update/excuse to try out my new lavalier mic for my video recorder. Listen, we all need excuses to make new videos, and this is obviously mine.
 
                                                                                                                                       

I'm actually also undergoing a modified Atkins diet at the moment as well. This is all in an effort to get off my anti-seizure drug as quickly and cleanly as possible. When I saw Dr. Kaplan (my neurologist) in Feb., he said that I should try to rid myself of my fettered dependence on the anti-seizure drug levitracatem (generic keppra). This was wonderful news. 

The news was so wonderful because I've noticed that my auras have been slowing down for several months to the point now that I rarely have them. If you don't know what an aura is, have no fear, you're no different than most of my other readers. These experiences are an unexplainable feeling that a seizure is coming and coming soon. For me, it is literally only a few moments before one happens. Literally, I had one once and I made it half way off the bed before I collapsed and crushed my forehead on the floor. I get them before every seizure that I have, but I also get them when I don't have seizures. The number of auras before seizures I have to seizures I don't have is literally 1:100. I have so many more before nothing than before a seizure.

The modified Atkins diet is my way of limiting the event of such an occurrence. It has actually been shown to be very helpful in stemming the tide of intractable seizures in children, and though no official research has been conducted on adult populations, I think that it's a fairly safe bet to assume that the same results can be expected. You may consider me foolish for thinking this, but in my experience. Being on the diet for almost 10 days, and having no increase in seizure symptoms is reason enough for me.

Here I am keeping all of you updated on my lack of seizure progress. Hopefully, this will all end in me getting off the drugs and having only minor shunt problems. That's my wish for this post.     

Advocating with a dizzy head

I spent the early part of last week in D.C. advocating for federal policy change with the National Brain Tumor Society. It was really interesting (and not to mention terribly exhausting). It's always amazing meeting people who've been through exactly what I've been through and hearing the jokes develop. Phrases such as, "We need a non-brain tumor patient to serve as our collective memory," are fairly common, and to a certain extent they're true; we have very different memories and not to mention appearances and physical capabilities now than we did before our own little afflictions arose. I actually have some videos for anyone searching for some help with their own battle.

Liz who is the singular captain of the LizArmy was there. She was diagnosed with a brain tumor and survived 24 months of Temodar. She's now a one woman fighting coalition against these nasty little beasts. Find her online Here's her plug:

Also Greg who is a miraculous survivor of Glioblastoma Multiforme (a stage IV brain tumor that kills just as quickly as it presents itself). He is a survivor and caregiver and he wants to help anyone going through the whirlwind of brain tumor diagnosis. Here's his plug:

As for me, I made an appointment to get an MRI  and follow up appointment on Monday, June 4th. I have days where I'm dizzy all day. Like I'm a guy with a constant sense of vertigo who can't orient himself to the nature of his world. I even have blisters on my feet from walking differently. I just want this to be over, but I do realize that this could just be the beginning of a long string of bad news. 

This is my most recent post regarding my dizziness epidemic. Enoy!

vlog numero uno

 

  

So this is my first vlog from my new tiny little video camera. I want to use it to update my catalog of clips here, so from now on this will be a vlog/blog, so that I can communicate all the better.

I've been dizzy, and I've been dizzy for too long for it to be a bug or allergies. I emailed my Jill my physicians assistant today, but I won't be able to hear back from her until Monday. I need to get the name of my shunt as well, so that I can potentially find out if someone up here in this land of hospitals-a-plenty has it. I hope they do. Well, wish me luck...

Also, please check out my new community site listed below. I just have an external message board set up right now, but I'd love to be able to have a whole hyper media experience set up for everyone, so it could truly be our own creation. 

New Community Site

Hi All!

I'm putting together a new site that is a community site for us all to post writings, videos, songs, poems or artwork that has been an inspiration for us during our common battle. If you know of anyone who would like to be a part of an online community then please direct them to my site. It's not up and running yet as I'm still assembling it. I need as many people as possible because I'd like to be able to have a paid web address one day.

Oh and I'll be assembling some materials that I'm considering for a book on it as well. Thanks so much for spreading the word!

https://sites.google.com/site/goliathandi/

August 22nd results: Clean!

Okay. So I have much to report to you. My MRI/checkup on August 22nd went very well. Everything came back clean and stable and there was nothing of interest to tell me about it. It was great, more of a social call than anything else. What is kind of disturbing me is that I was halfway expecting it. This is not good because I know that there will be one sunny day when those expectations will end up crumbling to the ground as a result of the earth shattering news that, in fact, he's back, and he's in better shape than ever before. I need to be thankful every single time I get news like this, but I'm slowly expecting it. I just need to work my way out of that.

I've read articles where 5, 6 years later, the tumor returns. That could very easily be me. How does a patient handle the news all over again? I don't know. I know that Doctors desperately detest giving it. I really don't want that day to ever appear my future.

In more positive news, the semester at Temple has started, and I think I have a good class. There are some talkers and trouble makers in there, so I think it'll be everything that I want in a good class. It's good because I'm anxious, but not overly anxious about teaching. I have a firm place to start which is really all I ask for. Not drowning in my own fear of public speaking anymore. It was actually kind of natural. 

Well at least I have a new super power...

So I'm just writing this to let you all know that after this whole brain cancer fiasco, I at least get a taste of what it's like to have superpowers. Now some of you may say that I don't really have superpowers, but that it's just from the massive doses of radiation I received to kill the unrelenting growth of killer cells in my brain, but you see, I don't see it that way. Just as the Fantastic Four were dosed with extremely high radiation in outer space, I was dosed with extremely high radiation (unfortunately, though, here on earth). Though they got cool super powers like invisibility, fire and flight, I, on the other hand, get the unique ability to grow extra curly hair in the tip of my hair at the front of my head (I was hoping that I would have a gray streak of hair growing in a la Rogue in X-Men, but alas, I did not.

I am proud of my curly hair. Like a tattoo, it's a sign of what I've been through. I just lost my list of comparisons. Actually I never really had one (I really have no idea why that was the first comparison to spring to mind).

Nevertheless, it's been incredibly difficult to get back to 'regular life'. I say this because I never realized the difficulty that I would have just getting used to barbacking again. A few weeks ago, there was a day where I had ankle pain, knee pain, and my throat was getting soar. It was killing me (that's the thespian in me in case you're wondering). So I've been wearing a knee brace for the last few weeks because the only thing worse than throwing out your back is having crippling knee pain.

My next check up's at the end of August, so if I don't write before then, you'll definitely hear about it after. 

1 year and no Tumor!

My MRI yesterday came back clean, and we all celebrated (Not really though. It was more of a private celebration). That being said, it's been a whole year, and I still have no Tumor. Needless to say, my whole team is very happy for me. I did kind of meander through hell to get here, and I'm hoping to stay here (rather than traversing back through the fires of hell again) as long as I can.


So I've come back to Philly. I was offered a job at Temple (which, as of right now, I'm planning on teaching). So I have to prepare the materials for that class. But before I get to that, I have to set my life back up here (by the way, I have so much junk, I think I'm a closet pack rat). Looking forward to it though. I think my laundry list of to-dos might be a summer-long list rather than a list to take care of over a few days.

I also desperately need a hair cut (I thought you guys couldn't live without that information).

OK OK this time it's for real

So I know I've claimed that I'm moving back to Philly, but this time I think I may actually mean it (provided that I can find a job). The problem is that I can't find work anywhere down in Atlanta (or anywhere else for that matter). I know the economy's seen better days but is it really that bad right now?

On top of that I'm so absurdly bored that I don't even have the desire to do anything anymore. I think my boredom is sucking the life out of me. All I want to do is sit around and watch crappy action movies. I really hope this isn't symbolic of what my 30's are going to be like...


I've got another MRI appt on April 25th, so after that I'll be heading up to Philly. Alright folks, get ready for a whole lot of me.

Summing up all my manliness for this one

This took a large pair of cajones to write guys because I don't really think that I wanted to admit it to myself. But I think that I may kind of be scared to get back into the real world (sometimes I feel like I am in the real world but I'm hesitant to go back to the fake one). After searching through all of these places that I could make a new home, the same fear still plagues me.


What makes me afraid, you may be asking yourself, to go back to the real world? I'm still working through this, but I think that at least part of the answer is that I'm afraid to get comfortable somewhere that I may have to rip myself out of again if (and maybe when) this tumor begins it's next ascent on my life. Can I not be comfortable anywhere then? I don't know the answer to that one.


I think that part of the problem (which I already know) is that I'm too comfortable here. I can work on music, watch TV, and read books all at my leisure (I can't find a damn job, ok!). I had trouble doing all of these in my old life (I didn't watch televised TV though, nor did I really want to). I think the problem is that I feel comfortable enough now to do those things here, and I may not feel that comfortable wherever I move. Sure, there'll be some hectic moving in nonsense to deal with, but I want to be this comfortable wherever I move. I wasn't ever this comfortable before, and I don't want to give it up.

So I'm stuck: I can't let myself get comfortable again due to possibly having to be ripped out, but at the same time, I want to be as comfortable as I am now. I don't know what to do. 


I've also realized that I can't move back into the life I had before. I'm not a 22 year-old going back to Philly. I'm going to be 30 next month, and I've decided that it's now or never when it comes to growing up (I was not an adult at 22 and this little project may not work out). I've just decided that I'm too old to be moving back to a bar job (that I'm not even on the books at) that I've barely held on to for the last 2-plus years and for a band that I haven't played with much for 2-plus years.


If I end up moving back to Philly (which actually looks like the biggest possibility right now), I'll have to start everything over again. So I may move close to Drexel in West Philly if I decide to do that. If this happens, I'm of course, really excited to start playing again with Cloud Minder, I just don't think I can move back to Philly only because of an old band. I'm old enough to expect a little bit more from my life.

What the hell am I doing?

I have no idea what's going on. I don't know where to live or what to do. I realized this last night when I should've been sleeping (i.e. the only time I have deep meaningful thoughts). Ugh... 

Anyway, I don't think I'm going to be moving back up to Philly...not right now at least. I don't know enough to say much more. It's far too cold for me to be up there huddled in front of a heater with not much else going on. I need to be busy to live up in a frigid situation like that. I hate to say it, but I'm going to be living down here for a little while.

I am looking forward to my trip to San Diego and my road trip as well. Beyond that I don't know.

Write more when I know it. 

That makes two clean MRIs

Since I've been up in Philly during my move-in-two-parts, I've had tons of trouble finding someone to take me to my appointment with Dr. Q today. It would've helped had I found someone that would take me down one month before hand, but being the fly-by-the-seat-of-my-pants kind of guy I am (Actually, I felt kind of bad because whoever would give me a ride would also be giving up a whole day) and after harassing several people to give me a ride, I finally forced Cassie into it (actually she very willingly gave up her much needed shift today).

Laughing our way down to Baltimore (which was just what I needed, it kept my mind from wandering to the massively disconcerting problems that potentially lay in my immediate future), we made good time (largely because of Cassie's persistent tongue-lashings due to my unsatisfactory driving speed). Cassie's a doll though. We had a good time, and during the nerve-wracking wait for my appointment, she was there for me. I really appreciate that Cassie.

I'm excited to be moving back into the real world, but that doesn't quite remove some of the strangeness that creeps over me now and again that I've felt since being back in the real (or maybe a better word is new) world. It's almost like I don't quite deserve it (hmmm...that's not quite it though). Maybe...how can I deserve to go back to a fairly normal existence when some of my friends have died and others have been ripped out of their lives never to return to what they once knew. I may be (or probably am) over-thinking this, but here I am, after this unbelievably life-changing experience, able to step back into my old life while also being given the gift of a second chance, a second chance to do things right or, at least, to do them with my feet actually on the ground rather than floating somewhere above. I'm moving back up here for better or worse (hopefully for the better), and I'm getting back to where I was before my world crumbled.

This is also my 100th post. I don't know if that's something to celebrate or not...   

1/1/11: Good bye to yet another year I've completely washed my hands of

2011. I'm finally able to start a year off with the right foot rather than the badly mangled stump of one that I've started the year off with lately. It feels good to NOT be fearing for my life for once in what seems like a vast wasteland of an eternity (I'm chuckling right now because, for some reason, the first Planet of the Apes just came to mind). I still have to make an appointment with Dr. Q on the 10th, but I'm not having any of the dreaded telltale symptoms that something new is festering inside my skull for which I'm ultimately thankful.

Everything's not as nice and neat as it seems though. Brewing under my (seemingly) content exterior, something's gurgling within me that's more unsettling than not. It's something that I never really expected to happen to me. So the problem is that I'm having trouble being a part of everyone's happy, careless (not really careless just seemingly so), and carefree lives. For example at my first shift back at the taproom the other night, it started off being good to see everyone, but then everyone started dancing around having a great time one girl even danced on the bar, and though it was good to watch these people having such a good time, I thought to myself that it had been such a long time since I'd been able to let loose and just freak out for a little bit like everyone there that I began to wonder if I could even do that again. 

It was so weird. Such an unexpected and altogether alienating experience, that it almost took my breath away. I almost didn't feel like I was myself anymore. I was living the life of my twin--alike in appearance and recognized as such--but I'm simply not the person I used to be. Now I'm left wondering what the hell I can do, even who I am now. 

I'm hoping this is just a phase that I'm going through in this real world re-entering period and that it'll end just as quickly as it began, but right now nothing's for sure. I feel like I'm walking around upside down. Strange...             

I'm Free!

I'm done.

Now I can actually move on to all the things that I've been putting off for the past 3 months: book prep, actually making music (instead of longing to play my equipment in my room that's just gathering dust), devoting time to not studying anything at all...ever, not reading things that're about systemic bodily processes or the nature of how microscopic parts of our universe interact with each other. I'm OK with this.

In some way (whatever way it is, it's obviously magical), I actually got an A and B; which is crazy because by the end of the quarter, I thought I'd definitely be getting a C in Chemistry, but somehow (which I won't go into for the sake of remaining on the positive side of the spectrum), I got a B. Hmmm, well I guess that's what you get for studying your ass off for an entire quarter (because I literally had nothing else to do). At least last quarter, I had the Cloud Minder album to mix. This one really dragged it's dull weight across the boring sands of time in the last three months...but now, suddenly, it's over.

The move back up to Philly's both exciting and I think its begun its slow descent over the edge of nerve-wracking. I guess I'm getting back into it the the same way I moved up there. I didn't really know much of anything that was going on before nor do I have any idea what to expect now (other than a show and a doctor's appointment, but I also need a haircut...badly). I guess that's just how my life goes I guess.  

Just another part of my honesty phase (I know...it's getting old)

I've been depressed for a long time. Wait...no...I was depressed for a long time. I hated school in High School. The socialness of it, the cliquiness, the snottiness--hated it (I did have some good friends though). Then I went to college and lived with Matt my swimming buddy in good ol' Russel Hall at UGA, but alas, I couldn't stand that either. Looking back on it now (and after reading up on depression for the last few years), I've realized how terribly negative I was in my youth. I was negative about the world but especially about myself. It seemed like I couldn't get anything right. I got through the depression over time (all it took was a diagnosis of Brain Cancer and a forced positive attitude...just those two small things).

Eventually, I graduated from college and decided that I needed to see a place that exemplified what I'd been studying in college (Anthropology and Religion). Thailand and other parts of Southeast Asia had just gotten wiped out by a major tidal wave (Dec. 2004), so I decided to go to Thailand for 6 weeks. After I returned (a bit thin and distraught), I moved up to Philly (not knowing a thing about the city) for grad school (but really to play in a band. Grad school was just what I decided to tell the 'accomplished' folks who asked). Unfortunately, four years later I was just depressed as ever. Nothing had changed.


What happened was that during college I hid it more and more from my friends, but more importantly, I was hiding it from myself. I knew it back in 7th and 8th grade but over time it seemed like it slowly faded from existence itself. Looking back on it later on, I rationalized it that it was just a perfect example of the terror and horror of growing up in East Cobb. I was wrong though.

In the last two years (since I've been diagnosed), I slowly began to wake up to my state of mind. You see I had to think positively. There was absolutely no other way around it. Eventually thinking positively actually took hold of me; that's when I really began to notice what had become of my old state of mind. 

What initially began to wake me up was an article that I read about depression. Essentially the article says that clinically depressed people don't express any of their ideas for what they want to accomplish in their lives because they don't enjoy anything. Apparently enjoyment precedes the discovery of what a person is good at and the desire to do something with one's life. If you don't enjoy anything, you can't possibly know what you're good at. The article goes on to say that depression causes the victim to lose a sense of what being happy even is. Clinically depressed people eventually forget what happiness feels like; they lose the sense of its meaning. After reading this, I began to wonder if maybe that's why I tried all those different hobbies and jobs. I just didn't have any sense of what I wanted to do with my life. To this day, I still notice myself wondering if people are walking around 'happy' or 'satisfied' or if they're just walking around as miserable as I was.

Now I know what being happy and satisfied actually is--it just took a brain tumor and a positive attitude, that's all. Now I know you're wondering why I'm going into this this extended diatribe about my depression (wah wah, I know). It's because now I have an excuse for going back to Philly (besides the fact that I have tons of great friends up there and a band to boot). This may sound cheesy, but I mean to start Philly over again, to start living over again. 

Thanks for reading.         

After six months...I can drive!

This is me contentedly hugging my new car. I got my license back yesterday, and drove around all night (actually just to two coffee shops and Walgreens), but nonetheless, the world seems so big now. I can go to Athens whenever I want, or I can go down to Atlanta whenever I feel that it's necessary--on a whim, if you will. The best part is that I don't have to wait two hours to get anywhere AND I don't have to wait for people to pick me up. I can come and go as I please. Ahhhh...

Honestly, I didn't let myself get depressed about this whole ordeal (an effect of my 'positive' attitude I guess), but let me tell you something: not being able to drive in metro Atlanta is not for the weak of heart. I could've very easily lost my mind and watched clowns jumping around in my mind but thanks to my 'positivity' (I put it in quotes because I'm not entirely convinced of its existence), I managed to keep my mind focused on more beneficial items. Here's to driving!

Thanksgiving and half-way to the end

This is how I spent my Thanksgiving: My family and I met with my sister's boyfriend Matt and his family at at her house for the Great Thanksgiving Meal. Now I realize that you're probably wondering why I capitalized the previous words. This is because, for the thirteen of us populating our group, we had two disproportionately large turkeys, one hock of ham, and several slices of chicken, not to mention all the dishes of fancy we had to accompany our wonderful meal. By the end, I was wondering when the next table of 13 would be coming in to finish off the meal (that we could tag-team wrestling style, of course). Unfortunately for me though, I was on chemo, and my hunger was somehow below zero (which means I didn't want the food in me, aka, I wanted to vomit). Unfortunately for me (or possibly fortunately depending on your perspective on the issue), I didn't get to eat all that much. It was a nice Thanksgiving though. I'll give it that much.  

Which brings us to my second point, as of right now I'm halfway through the chemo portion of this happy little venture (which I will not look back on with anything resembling a smile in any way). My red and white blood cell levels are slowly descending so there's a chance that I may have to have some other treatment sooner or later, but that's neither here nor there.

So I booked a flight to start the move back up to Philly.  Hopefully, I'll hear good news that I may (or hopefully will) receive at my doctor's appointment on Jan. 10th. Then I'm flying back here on January 12th to go to Kev Toland's wedding in San Diego, so I somehow got sucked into a road trip involving 4 friends, 2 dogs, and 1 car (I'm actually really glad. It'll be tons of fun and exactly what I need after all the craziness of the last couple years). 

This whole deal still seems unreal to me, though. I haven't worked more than a few hours a week this year (I wonder if my back will get tired from standing all day like it used to when I first started working in the service industry back in High School.) I don't know if I signed up for starting life up again like I'm back in high school. Not that I didn't have some good times back then, but I'd hate to be in that angsty phase again. I'm glad those years are behind me...far behind.

All Clear!

I just got news today that my MRI results came back clean as a whistle. I am so relieved. Just in case you find yourself involved in an argument with someone trying to convince you that getting up at 5am and fidgeting like a child is worthwhile is, in fact, lying straight to your face (in case you were wondering). Now I just get to relax in Philly with my friends until Saturday evening. It's strange, having nothing to do is kind of...uncomfortable (and for some reason, I really don't feel like writing right now).

Just wanted to let everyone know I was so happy earlier that I gave my doctor a big ol' bear hug!  

I've finished one-quarter of this (ridiculous) race

Phew! I'm glad that's over.

I just finished month 3 of the looonnggg 12 round chemo program that I'm on. This round was fairly tough too. No different in terms of quantity of the drug, but I don't actually remember much from the last week (I struck an unlucky note and won a test and a speech that I had to be studying for the whole time). For some reason, this time felt significantly more trying than the last time. Maybe it's because I knew what was coming, and, like the train traveling down the tracks to my end--I could see it coming.

That being said I feel better now; not totally back to normal, but certainly better than I was feeling. For a little while, I didn't feel any desire to talk to anyone, I didn't want to leave...ever, or do anything. I was sick and exhausted. Not so tired that I wanted to sleep all day. No...I couldn't sleep at all actually. I'd just lay there and hurt all over. 

I'm complaining because it's terrible compared to normal life, but in the world of Chemotherapy, it's nothing. I can do it in my own house and feel like crap on my own terms. Everyone else with cancer has to go somewhere to have these toxins pumped through their veins...it's terrible. They get poisons pumped into their bodies and then they have to feel themselves start feeling terrible in public. Fortunately for me, I don't have to do this, but I just felt like expressing all the crap that I go through when I have these episodes. 

Essentially, I think this is the way my life's going to work for the rest of my chemo program. At the beginning of every month, I'll fall off the planet for a week. Then I'll reappear as if nothing ever happened. Strange, isn't it?