Better prepare for a whole lotta drugs

I met with my oncologist, Dr. Lesesne, last Tuesday, and I brought a whole slew of thoughts and references for him. He ok'd my whole drug schedule, so (as long as insurance covers everything) I'll be taking four--yes I said four--different drugs. 

I'm starting off with good ol' Temodar, but I'm tweeking it a little. Being that I've already taken it once, and the tumor returned. It would be silly, if not down right stupid to use it again in the same manner, but expect different results. So I'm going to do a very low dose schedule, but I'm doing it every day. So I won't be doing it for 5 days in higher doses then resting for 23 days. I'll be doing it in much lower doses, but I'll be doing it everyday with no breaks. Hopefully, this will keep my cancerous cells which are already used to this drug under a more consistent pressure to wither away and die.

I'm also going to be coupling this with Celebrex which, as many of you may know, is used for arthritis and generally for chronic inflammation. It's essentially an anti-inflammatory agent that worked better than the standard of care in a German clinical trial a few years ago.

Then I'm also mixing in a little bit of Accutane which, many of you may also know, is for acne. Now being that I'm not a pubescent 8th grader, it actually has other effects as well. It targets the Epidermal Growth Factor Receptor. By blocking this, it can help slow tumor growth, which, in case you're wondering, is something that I'm hoping for.

Now the cherry on top is going to be chloroquine the ages-old, quinine-derived malaria remedy that I used before. This essentially helps keep the genes of the cells stable so that they can't mutate around the Temodar. It'll keep it killing them as long as possible.      

So essentially if you are what you eat, then I'm going to look less like a man and more like a test tube in the very near future.


I'm also going to meet with Dr. Friedman who, as many of you don't know, is quite the neuro-oncologist, but is also quite the ego, or so I hear. So I'm heading in there with all my defenses as high as possible, so that if that SOB makes me feel worthless, I'm gonna roll in there and have no hesitation at rolling right back out. You can only put up with so much you know. I have a great team so far, so I don't need anyone else's ____.   

Road Trip of Disaster 2012

Well I've made it. I don't know how, but I got back home. I wish I would've caught more of the experiences of my road trip on video, but there was too much poop-and-cat-vomit-handling for it to be convenient. Just see for yourself:

Yeah. So here I am back in Atlanta with lots of stuff to do over the next two weeks. Let's see. I have to get back up to Philly for a mixing session, then I have to get back down to Baltimore to visit the hydrocephalus clinic, so that I can find out the origin of my dizziness (which I already may know about, but I'll have to talk about it later since it's so disconcerting). Then my brother's coming up to Philly to help me move out, and then we're off back down to Atlanta Saturday mid-day. Yikes.

So this was the road trip of disaster, but I think that the next week will be the week of disaster until I can get my bearings again.

Okay next time I'll talk about what my plans are and why I think (I may know this actually) I'm dizzy.

A second dispatch of not-so-good news

Okay so I'm trying to stay positive here.

I just talked to my physician's assistant and it looks like I have two--that's right two--new growths situated right in the middle of my most valuable organ that I have plaguing me right now. Part of me thinks that I should just be thankful for the last two years of wondrous freedom that I just won; I didn't have to worry about what was happening, that much, nor did I have many check ups and MRIs, but for some odd damn reason I don't. I don't really care that I had two years where I had to worry slightly less than before when my mind was reeling from the vast amounts of intracranial pressure that was about to make my noggin explode nor was I so concerned with reveling in the joy of a non-tumor-based lifestyle.

No, I was concerned only with getting back on my feet. I felt like I'd been abducted by aliens, and made to do thoroughly dehumanizing tactics, and then placed gently back in my house where I awoke and felt like an entirely new implementation of what I once was.

Okay so to bring this back to the more constructive side of life (on which I prefer to keep my thoughts). I've decided to take the cocktail-based approached to treating this thing. I'm also going to be considering some vaccine and immuno-therapy clinical trials as well. There are more targeted treatments out there now than there were back during my first occurrence, so I hope that I can find the right one (or two), and kill this damn beast who keeps invading my brain! 

Round 2: He's Ba-ack

Goliath, my most formidable of opponents, is back.

If you look at where I've circled in the MRI above, this is where the recurrence is occurring. At least it's in the same spot as before. Ugh... 

I got up at 5 AM today to get down to Baltimore for my MRI/checkup, and after hitting quite a snarl in traffic, I made it (just a few minutes late) for my MRI. Everything went smoothly at first: got in for the MRI which was overseen by Lisa my happily recurrent MRI tech, and I even got a copy of the scan all in good time. 

This is not how the rest of the day turned out.

I had a notion brewing in the back of my brain, though, that contrary to the appearance of the day, all was not well. It manifested itself in the last 6-8 weeks of dizziness that has plagued me. It hasn't come on gone, but it has been better and worse. The more tired I was usually meant the worse my dizziness would be. I had a scale worked out 0 would be unable to stand (which thankfully never happened) to 3 which was perfect for the day. Three, I found, was the ideal; it was there at the top just beyond my reach. This scale's use, though, has worn itself out.

I've been on many drugs, elixirs, and other medical oddities to help stave off this affliction, but as it turns out, they can--and did--only work for so long. So this is the next step I must take in what my dad calls, "this adventure." I can't help it, but I beg to differ.
      
As I've had very little time to think this over so far, it seems that it's been forever since my last surgery. This is probably because my memory of my entire cancerous affliction is severely handicapped to say the least. What I have learned is that time is not the most important factor in life, but, I know it sounds cheesy to say, it's what we do with this time that matters. Whether I live 31 or 81 years matters very little compared to what I do with that time. So what should a person do that matters most? I haven't come to the conclusion on this question yet, but this is where time and physical ability actually play into the equation. It's really tough for me to get a doctoral degree when Goliath's perniciously increasing my visceral apathy and maleficently eating away at what I have left of a lifespan. It's all I can do to keep my head held high, but I've been through worse or at least the same before, so for the lack of better wording, here I go again.      

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.