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?   

Month two goes down, down the drain

Here I am writing at the computer just having finished month two of my twelve month stint and I feel tired...

I wrote that just after I finished doing chemo last week, and I was tired. So tired that I couldn't finish writing this blog. In fact I was so astonishingly tired because I actually threw up after I worked out too hard. I know what you're thinking, "Wow, this guy can sure take some crap." Well the truth is that, without a doubt, I certainly cannot; I wan't even taking the chemo that day. It had been two days since I was on the chemo. I said, "OK today I can workout. I'll be fine. What could go wrong?" All I remember is throwing up on the plants outside.

...I'm actually not that concerned about it, actually. At the time I had low level nausea for the last two days of the 5 day chemo cycle and then the first 3 days afterward. That's why I have the anti-nausea wristband that I'm amazed at in the picture above. Actually I don't if I'm amazed or more amidst a taadaah-moment.

Well I'm very happy to share that I have hair growing in. It's not blonde or frizzy (though it'd be funny if it was like that...but only for a minute). I have a massive gash crossing my forehead above my left eye all the way over to my left temple. Quite impressive, I have to admit. I guess I'll always stand out in crowd now if I'm not wearing a hat.

So my current thoughts about the future are kind of ever evolving, but what I'm thinking at the moment is that I really miss playing in Cloud Minder. That being said, I want to try to get back up to Philly, but i also need to continue doing something with my time, i.e. mri technology, i.e learning it, so I'll have to apply to some schools up there. I'll keep you posted on the goings on in this realm.      

4th of July in Philly and weddings galore!

So I'm spending my 4th of July up in Philly mainly for Jay's (the other Cloud Minder guitarist) wedding. It was superb. Although on a side note, I did accidentally kind of miss the actual wedding...oops. You see there was an a-hole of a foreign driver that I couldn't even understand over his complaints the whole drive. He doesn't know where we're going, and I'm trying to find the place, but this guy won't shut his yapper for the fifteen minute drive that was ahead of us (it actually turned into a longer drive as his complaining got us lost). Needless to say, this guy was a jerk. I got so tired of listening to his complaining that, after his requested tip of 6, 7 or 10 bucks I gave $8. I couldn't handle his whining anymore. Oh and I wasn't even there yet. I still had to walk to get there. Jerk.

The wedding was fantastic though. It was small only about 50 folks at a wonderful house called Appleford out amidst the beauty of Lower Merion twp. After the wedding, I got there and super hydrated myself (I was mighty thirsty after walking as far as I did.) It meant quite a bit to Jay that I was there, so I'm glad that I went. I'm going to include a picture just because that's what I do.

By the way, this picture sums up the beauty of where I was (it actually doesn't at all. It was just one of the few shots of the grounds that actually turned out from my camera that needs a serious menu reset.)

Tired, I'm really tired

Well one thing this seven day chemo extravaganza turned up is that I'm tired. I'm absolutely, totally exhausted. I'd be sick many nights, but thanks to the anti-nausea pills the nausea didn't really take a toll on me. But the last two days I was on that fantastic little poison pill, i started feeling exhausted from the moment I opened my eyes. I wanted to go back to sleepyland. Unfortunately-for some unknown reason-i couldn't. It's not like I didn't want to go visit sleepyland, I just think I have a low red blood cell count. So it's not like I'm tired, essentially I just can't get enough oxygen in my body to feel more energetic.

Ok I think I'm going to go lay in my bed now and drift off to that strange land between sleep and wakefulness. That's all I really want to do right now.  

One day down, 364 more to go...

Well I've discovered today that starting chemo makes my lack of driving ability seem less frustrating as I'm tired (even when i wake up from a nap). This isn't nearly as bad as I feared, so it's a good thing...? Hopefully my tiredness will lend itself to higher energy levels in the days and weeks ahead, but as for right now, I have no desire to do anything. My mom, my niece and I are heading over to Borders to stand around and look at books, and I find myself seriously questioning whether or not I can actually do this. 

So I think I need to back up first for a minute and explain some things. I've convinced my oncologist to put me on a dose-sense plan of Temodar. It would seem (according to an informant who is a long-term survivor of Glioblastoma (GBM) that people with negative values on their MGMT tests (done to test the effectiveness of Temodar at Mass. General) actually seem to respond better to Temodar when on this plan. So my plan goes as such: I take 250 mg/day for 7 days then I take 7 days off, repeat. So this schedule will have me on a smaller dose for more days/month. Instead of being on a 5 days of 28 schedule I'm on 7 and off 7. 

Well now that I look back, I'm sure I could've stated all this info much more concisely (and probably much less boringly).

So I think in the coming months ahead, it remains truly important that I'm not totally out of it for half the month every month (especially when I'm in school). Though I'm sure that many people have been through much worse, it's still not a very pleasing thought.

Seizures: can they cause anything good?

So...I'm stuck in the Atlanta suburbs with no way to drive. It's just me and my bike avoiding terrible traffic, trying desperately to get around. I wish, I really wish that I never would've had those seizures...life really bites right now. I can't get around. I have to wait for my friends to pick me up, or even worse, my parents have to give me a ride. "Hey there twenty-nine year old wanna feel like you're back in high school again? Well here you go. That's just too bad." Ugh. 

So I'm starting to go crazy. I have to get out, get around or do something to feel my age. I'm taking classes at a Tech School, and although it's good that I'm doing it, it's still something that people much younger than I do. AHHHHH! I just need to let off some steam, but I have no idea how, when or where (or maybe why???).


I think this is actually worse than all the cancer crap that I've been through. Is that possible?

Philly: A seizure-filled experience

Well I was supposed to have a good time in Philly, but instead it turned into a terrible trip full of seizures. Well there were just two (I think that would count as two to many though). On my side, I had gotten off my anticonvulsant drug Keppra about three weeks (I think?) prior to flying up there. On the other side of things though, I did kind of ask for it by losing the Keppra, but (going back to the other side of things) I didn't have a seizure for upwards of three months. Can you expect anything less?

So we didn't play our show. The guys in the band thought that it was a bad idea to play a show the day after a seizure. With it put that way, I guess I see where they were coming from. The unfortunate side of it though, is that I didn't get to play a show...wah wah, I know.

Fortunately for me, I'm back on Keppra now, and (though it's only been a week), I haven't had another seizure. The sad part of this whole story is that at this point in time I'm terribly afraid that I'm going to have another one; so afraid that I don't know if I'm actually feeling a seizure coming on or if it's just the fear that provokes the feeling. Like I said, this is the unfortunate side of it: are the seizures entirely psychosomatic or are they a real event occurring at this point in my ever so eventful life? There's no way for me to know the answer to this question right now, so like all else that's important in my life, only time will tell. If I don't actually end up having another seizure in a few months...then I'm in the clear. 

Oh yes and due to this whole seizure epidemic I can't drive right now, so now I'm stuck here in Cobb County with no car. Needless to say, I bought another bike...and the bus system's next on my list. Cobb Community Transit look out!

Oh, I can't remember if I've posted a picture with all of my hair gone, but here it is!

   

I'm Done!

The 6 weeks (well 7 actually) that I had to spend going down to that wondrous radiation clinic every Monday through Friday are over. As well as the 7 weeks that I had to spend taking chemotherapy every night are over. In other words, It's done. (Take that radiation oncology!)

Well actually it's just over for a few weeks. Then I'll do the lonely trot (aka the incredible hulk series) meandering down the chemotherapy highway in my attempt to elude the agents of cancer, (but who are really asking for it by messing with the aforementioned incredible hulk). But at least i can just be chemo-boy and not radio-chemo-boy. Hopefully the next year will go by as quickly as the last 7 weeks have. Though somehow, I suspect that that's not physically possible. According to physics a year is always and in all places longer than 7 weeks. It just is.

I have a couple weeks to heal (please die cancer), so in the meantime, I'll be heading up to Philly. So all you Philly folks better get ready for some ultra concentrated Daveyness.

Oh We're also playing a show up there on Tuesday the 1st. Don't know where, how or with whom yet, but for the first time in over one and a half years, we're playing out. Nice. Hmmm wait...I play guitar right?

Six days and a little less hair remain...

I seem to be losing more hair everyday. Today my head started peeling, BUT I no longer have the rapid headaches when I lower my head down closer to my heart. I'm so glad that I won't be dealing with those anymore; I was starting to worry.

I do have a pretty killer mohawk right now. I guess it'll be a nice thing to have during the months of waiting for my hair to start growing back. I may have to shave it off though. I don't know if I can have it for three straight months. Let's see...I've got two nasty looking scars and a mohawk. That's fairly intimidating.

SO...

I'm starting to think thoughts of next steps. Any suggestions? I could move back up to Philly, get a house close by and start a little studio in an extra room and get back into teaching (I guess kind of try to pick up where I left off) 
or
I could stay down here in Atlanta for a little while and take an RT class at Chattahoochee Tech. I'd be living here for free at Ben's (my brother) house and working for my sister, but I don't know if I'd be happy with this...

I need help. Thoughts???    

A new haircut and Jasmine's birthday hat

It was tough, but today...I did it. I shaved it. My hair's almost gone for the first time since High School. It kind of feels good, but at the same time I feel like my head weighs next to nothing, and there're some hefty bald spots on it, but nonetheless, I don't have to wear a scarf (the birthday hat's not gonna cut it either), and for that, I'm more than pleased. Because as you see, I don't want to just be a cancer victim. This cancer's just a trial that's happening to me in my life right now. I'm dealing with it as anyone deals with anything difficult: one step at a time. The scarf would make me more of a victim, and I'm not a victim. I'm just a guy.

There are eight more radiation holes left in my proverbial radiation belt. It's come and gone rather quickly. The whole fourth surgery put a bit of a wrench in the works, but I got through it, and now here I am. Lately, I've noticed that I need to have more time to be able to get more done (I'm so glad that I actually feel this way rather than just being tired, throwing up, and having whole-body aches). Two to three hours midday really confounds the flow of time. In the next few weeks I'll be able to do much more.

Now I have to figure out how to take the next step...

Comb over of the century!

I'm close to 100% positive that I looked like a Hindu priest before re-doing my hair took precedence today. If you look closely enough, I'm pretty sure that you can see the little red dot on my forehead. With the beard and the Hinduish head dressing, how could I not be mistaken for a priest? (sans that shirt me thinks)


This is what I looked like right before I got down to business on my hair today. As you can see, there's a horrific dearth of hair on the front of my head. This is from the radiation that scandalously accosts me daily. It was fairly horrific at the hospital, my hair suddenly just all fell out. It was everywhere. All over my pillow, stuck to my shirt. The first shower I took after surgery must've looked like I was being shaven, but I wasn't. My whole head of hair was in the drain afterward and I didn't even cut it. It just fell out.


Due to these affronts, I've had to manage my way through haircut territory. Being that I have very little to work with, I've decided on a mohawk/comb-over-of-the-century. It's the first time I've ever had one, so we'll see how it looks when I spike it out. I mean, it will be fairly hardcore. With the scar stretching across the front of my skull and the other in the back of my head--mohawk flaring--I wouldn't want to mess with me.

This is how I look now. The sides and back are totally shaven, and all the hair you see is combed over from the middle of my head. This is why it is the comb over of the century. It doesn't look too bad from the front here, but from the back and sides...yeah, we'll have to see about that.

Honestly though, I feel like a different person compared to the way I felt a week ago. Let no man say that hydrocephalus is for the birds--It'll bring you down without you even knowing it. You simply just fall asleep and never get up--and when you do, you throw up...a whole lot.

Today was the halfway point of my radiation therapy. One-half done, one-half to go. It feels good (now that my hair's in the process of falling out) to know that I'm through (still in maybe?) the worst of it. It's weird (kind of like an adventure that I never ever would've undertaken in the past), but I feel somehow blessed with the knowledge that I can get through this. It may be scary and it may not be any fun (for a while) sometimes, but these times always pass. Such is life though, right?

A final comment and ten days of distress

So Shannon reminded me of a thought that I had regarding one of the last photos that I showed (If you go back to my last entry, it's the top image). The picture is of an all too usual looking man squatting (I think this is the best word for the picture, by the way.) It's of this all too usual looking man sitting down as St. Joe's welcomes all of their patients to take a seat...and a load off. While this gesture is all too considerate, the image that they're using is fairly hilarious, and I think everyone thought of this guy pooping on the chair (to put it nicely) when they saw it. I'm welcoming any other foul descriptions of this image too (be careful with your wording, though, my niece is on here occasionally).


SOOOO... I haven't written in 10 days because I was horribly ill with what I first thought was a hangover (off of two beers, ha!), then I thought was the flu as it persisted so long, and finally have come to find out is a fairly advanced case of Hydrocephalus--fluid accumulation in the brain. (This picture was from when I was trying out for the Perry Mason look-a-like role).

It started out rather poetically actually. I was flying down 75 South trying to get to Bob's Dirt Worshipper show on the Tech campus downtown--in time. When all of a sudden, there were flashing lights behind me. Yep. I got busted doing 79 in a 55. That hurts. I'm going to have to pay for the fee and then go downtown to see if they can reduce the mph overage on that one. One year=totaling my car + 24 mph over the speed limit. Not good.

Then I couldn't find the show, got lost, and found the place just as they were finishing. Not one note, my ears never heard. Everything being loaded up and in order, they gave me a ride back to my car and we went over to The Local for a couple of brews, then we headed home. No problem until about 10 AM Saturday morning. Then the puking began and it didn't end 6 hours later. Yuck.

I recovered from that little event...kind of...and then it began all over again five days later. Since then I've been sleeping almost constantly, eating very little, the welt on my head has been taking on vampiric proportions, AND duh duh da dahhhh...my hair's starting to come out now.

So as I feel incredibly attractive right now (and not at all like some kind of horrific looking mutated beast scouring the deep dark waters searching ever so cautiously each night for my prey obscured by its innate look of innocence) I think this is a fairly low note for me right now, so I'd appreciate any advice that you guys have for me right now or just tell me to keep my chin up. Either way, I know I'll make it through this. Maybe just not as quickly (or easily) as I was thinking before.


I'm flying up to Johns Hopkins again tomorrow to try and get this shunt in and back down here to Atlanta in as few days as possible. Missing a day of radiation is not in the radiation deck of cards so to speak. Although it happens to just about everyone, the major studies haven't been published with people that need to get a shunt put in amidst their radiation schedule. Here's to five more days sans radiation.

1/3 the way to the light at the end

Yep this is the mask that squishes my face (and head bumps) into place everyday. I don't think I can even open my eyes much sometimes. Monday was really tough. I guess my head was so swollen that the mask barely fit. It was ridiculously uncomfortable. I almost told them there was no way I could handle it, but I made it through...somehow. I talked with my doctor afterward (Mondays are see-the-doc days), and she said to try squishing it down with some gauze that I wrap around my head. That would actually keep some of the fluid from accumulating under my skin. Sounded like a good idea to me (albeit rather gross, if it was happening to someone else and I was reading about it). So now I'm a gauze-wearing freak of nature. It actually does feel kind of nice though...strangely. It was the same when I was in the hospital (I can't believe it's been over a month since the surgery now). It's like I don't quite have to worry about my brains falling out of my head (I think I just reminded myself of Peter Jackson's Bad Taste). It just kind of holds it all in place. I think it's kind of my secret security blanky. Twenty-nine and still holding on to a security blanky...nice.

This is the massive radiation machine that orbits my head (literally. it can turn itself totally upside down). I get six doses of radiation each day. The circle at the top rotates around my head. There are these long lead leaves that the machine uses to administer the radiation to a very specific area. The leaves block the beam from being out of place. (In case you're wondering, it's called IGRT/IMRT). I do it for 6 weeks/30 business days. Then I take a month off and start the "maintenance" dose of chemo. The name of which I find hilarious as no dose will ever get higher (due to toxicity limitations) than on the maintenance dose. I'm pretty sure it's actually high dose chemo (let's just call it what it is). That's it. That's my all to brief discussion of the St. Joseph Radiation Treatment Program for you. I hope you've enjoyed it. Thanks.

The sub-ingeneous cotton ball predicament

Dear Brains Behind Temodar,

Thank you for your ingenious new drug that can kill my brain tumor and make me all better inside. There's only one problem, though. In the wonderful little process that you guys have spent thinking this drug up, you've overlooked one...petty...but albeit entirely frustrating bit of nonsense. I'm calling it the sub-ingenious cotton ball predicament.

A la the picture above, there's simple physics to consider with these bottles. A hole slightly larger than the size of my pinky finger doesn't really allow for a massive wad of cotton to be pulled through it very easily. What would make this more sensible??? Hmmm. AHA...a bigger hole! You see if you made the hole a bit bigger, say the size of the rest of the bottle, this whole mess could be entirely avoided. I don't want to have to ask my niece to use her little fingers to get my cotton ball out of the small-dose-of-poison container for me. (Is that even legal?) You see, this is just a tiny bit of frustration on top of a mountain of inconvenience. First we get the doctor bursting through his/her office saying, "OH...yeah, you have a brain tumor...and it's rather large." Then we get the brain surgery, and on top of that we get the news that it's cancerous: chemo and radiation...forever! Then we have to get six weeks of high dose radiation (that will probably shorten and severely change the rest of my life) and the cherry on top is this damn sub-ingenious cotton ball predicament.

So please, with your next batch of Temodar pills, just make the mouth of the jar the same size as the jar itself. That's all I ask. Thank You.

Truly Yours,
David Sommer

Cutting out steroids may be worse than radiation

Today I felt SO much better than I did the last two days. Get this to, it was just because I was trying to get off this dexamethasone (a corticosteroid) to a) let me sleep longer than 4 hours a day b) see if it has anything to do with this massive bump sitting on my forehead since the beginning of time (is it ever going away?) c) get rid of the acne that's creeping up on my face and d) get off the damn drug! Unfortunately, my body literally started to crumble when i cut down from 4mg to 2mg (that's how potent this drug is). I literally lost every ounce of energy. I couldn't help but sit around and watch TV and had annoying headaches. Sounds great, huh? (at least I don't have to worry about the tumor returning right now...?)

Now I'm feeling good again. I don't think the Temodar (chemo) pills are creating much of a problem yet, and I haven't started losing any hair from the radiation. That will happen though. It'll kill everything in it's path by mid 4th week. So I guess I'm either going to have to get a very strange looking haircut or shave it all off. Hmmm which one should I choose? I could kind of go for the odd haircut. I mean there's no time like the present, right?

One session down, twenty-nine to go

It's been a rough day. I took those two little chemo beauts in my hand last night and decided that it was time to cut back on the steroids I've been taking. Hopefully, this will give me a reprieve from the incessant hunger I've been feeling (The chemo has to be taken on an empty stomach which I've found increasingly harder to do post surgery for whatever reason.) Anyway, the whole combo of drug reductions/additions and then throwing the whole radiotherapy thing on top hasn't made for the most smooth transition from healing-from-surgery to being-killed-in-small-intervals. I've had a headache and felt out of it from cutting back on the steroid, and I was feeling sick earlier which I can only guess was from the chemo having it's way with my stomach. Then I got radiated! Yay! (ummm...opposite of yay actually.)

Here I am ready to get my brain blasted by high beam radiation. Contrary to how it appears, the mask is really uncomfortable actually. I can't really see anything or move my head, but I can hear these arms moving around me sounding off an alarm when the radiation beams begin to penetrate my skull. It was really comfortable in there (that's a big joke). I couldn't wait to run at full speed out of that place. I think my heart was racing the whole time thinking about all the radiation my poor little brain had to bear.

I need to stay positive though. This is just another step in this whole damn battle that I'm waging with my brain right now. I've got the surgery bit down, but this...this is a different story. I'll have to stay strong to stay on top or I'll simply float away.

Twenty-nine more sessions to go...

Stitches removed, Philly friends, temodar dread

This is my daily dose of pills...it's quite a bit. Munching them down, I can ingest them rather quickly, so that's not really the problem. Actually it just takes a while to count them out each night. That's all, and it's just something else to have to break out at meals when I'm out on the town (which rarely ever happens by the way), and I wonder what every pair of eyes that glance at my pill stash (equivalent to that of an old man's) thinks when they see me pull the massive container out. Maybe I really am the equivalent of an old man now. I mean I like the way they dress, so...

This is how I got my sutures removed (the doc who did it was Portuguese and a bit on the hilarious side). It didn't hurt that much, but it did take a while. Josie was there to document the process through photography (somehow, someway it makes me feel like the whole thing is happening to someone else, and it's my job just to record every bit). He had some rather hilarious surgical tales, though (I don't feel right repeating them here. They were rather confidential). I know I'm sorry. Let's just say it involved older men having their foreskins removed and a doc passing out during the surgery. It kept me laughing the whole time to say the least.

That being said, it was a bit unusual. I feel like I've gotten so used to having these surgeries that it's happening to someone else. The fear and dread I felt before have vanished into this vague sense of comfort that I truly question during my hospital visits. I mean I'm almost friends with my neurosurgeon now (the picture of the interview below), and I don't really know how I feel about that. Life is so different now than it was before. I have a focus. I have something that must be done in order for me to continue my existence. It's almost comforting...in a really bizarre sort of way. I really don't know how to make sense of it all. I feel like I was kind of searching for some bizarre sort of tether to the ground, and this has fixated me to it. I'm no longer vaguely meandering through life. I have a new list of things that need to be done, that I need to accomplish before the end. I didn't feel like that before. It was all just...meaningless?
This is my interview with Dr. Quinones. It went so well (and I had coffee made from this futuristic coffee machine that made a perfect cup one cup at a time. I'll probably never taste that again, but then again, who knows???) I felt great afterwards. Goliath and I is up and running now, and I'm feeling good about it. Rachel's excited about it (she's a writer that's helping to guide me through the writing process), and I am too. My next interviewee is Sarah, but first I have to transcribe my interview. That'll take a while, a long while. Hopefully, it'll go as smoothly as possible.

After my interview, Josie drove me up to Philly where I saw some friends (many of which I haven't seen in a ridiculously long time), and Cloud Minder finally got our album entirely planned out. Now we're in the final phases of editing and mastering. We're expecting the release sometime this summer. Almost 2 years without a show...I feel like I need to add some kind of explanation to the album. Needless to say, its has taken on a much more meaningful feel throughout the last 2 years. It's almost like a story of the whole experience now. I don't know if it'll ever actually be complete.

Now I just have to get through the next 6 weeks of radiation which starts tomorrow. Tonight is the first time I have to take chemo (Temodar) which I'm rather uncomfortable with, but if I can do 3 surgeries in a year and walk out of the NCCU, I guess I can do anything???

Back to Philly pre-brain blast next week!

So I'm flying back up to Baltimore on Mon. and Tues. morning next week, then I'll catch a bus or drive up to Philly through early on Friday morning. The Baltimore fiasco will take place for two days as I'm having my sutures removed, getting the docs notes from the surgery....and getting the pathology report (let's just hope this thing hasn't turned itself into a snarling beast of a GBM yet). So I'm rather nervous about getting the path report. I may not open it until I get back home to be in the caring environment of my family. If Josie can make it down though, I may just suck it up and open it up with her around. I just don't want to open it alone.

Then I'll be heading up to Philly on Tuesday morning after I interview my surgeon. It's for a book I'm writing tentatively titled...Goliath and I (shocking, I know). It'll outline all the wonderful people I've met and a kind of parallel telling of their stories with my own throughout this terrible adventure. That's as far as I've gotten with it so far, but I'll keep you posted, and if you have any super ideas for it, I'm open to any and all of them.

I'm looking forward to getting back up to Philly for a bit. I haven't been up there in months it feels. Well I guess it has been months now that I think about it. Life's crazy...

Well that just about rounds out my 3rd brain surgery

Well I've finally gotten done with my 3rd brain surgery (Hopefully my last, though somehow, I don't really want to have to hold my breath on that one. I may not make it). It actually didn't even feel like a surgery at all. Besides the fact that I was ready to go in to get it done 2 weeks prior, it just felt as basic as breathing this time. I've been through it all before: the pre-surgery tension, the stresses, the what-fors and why-nots and finally the acceptance, but this time it was just less. So much less that I almost forgot that I had a major operation. I just wanted to escape the hospital under the cover of night and get back to...something else. I don't know what that else that would be right now, though. This has been all I've been dealing with for the last year. Therefore, I didn't escape the hospital.

I just stayed, but I did walk out. Out of the Johns-Hopkins Neuro Critical Care Unit, the step up from ICU, I walked. Three surgeries down, 1 year, bring it. I don't mean to sound self-absorbed here, but I was very proud to be slowly shuffling my dizzy feet down the hall out of the hospital that day. I felt like I wasn't back at the beginning where all of my fears lie as I've been worried. I was here, now with my whole future in front of me. It felt good.

So here's a picture of me when I finally got back to my room at the best of westerns. It ain't pretty but dammit, it's me.

Take that tumor!

I've been pontificating on the most effective way to cause the tumor to question the necessity of it's own existence (the theory behind this is that it would get sad and lonely and simply off itself), and I've decided that the most effective means would be to denigrate its most highly rated personality attributes. These features are (not appearing in any proper order):

1) Its ability to multiply at a blinding pace
2) Its tendency to manifest such crappily built venous structures
3) Merely its own existence (this one shares my personal favoritism)

The theory here is that by making it feel flawed for even existing, we may be able to coax it into not existing.

For example, treatments such as, "Look at yourself...," or vomiting profusely upon one's first attempt to make obviously superficial conversation with it. These treatments should cause the tumor to question its ability to coexist with beings of such superior intellect and possibly rescind the establishment of its own existence. The trick here is to take off-putting references to the tumor's own attributes and wholly blow them out of proportion. Crying to itself, the tumor will hopefully jump off the closest unsuitably tall object in my head.

Thank you.

A temporary stay of incision in the OR

Ok so my surgery's been rescheduled for March 12th. The reason: garlic. Apparently, it behaves much as aspirin does in the blood; it thins it out. I was using a (high quality) garlic supplement that actually does thin out the blood. (It's called Garlinase Fresh and it doesn't cause odors to emanate from your breath. You never would've known that I was taking a massive garlic supplement. Oops) Anyway, for those of you facing cardiac problems blood-thinners are right up your alley. Give it a shot; It helped (or hurt) me (Depending on the perspective you take on this).

Anyway, so keep those prayers and well-wishes up for another...oh..two weeks? Well I'm half kidding here, but I'd like it if you just kept me in your thoughts and prayers to get me over this little hurdle. ok take care now.

My 3rd stay at the furthest operating table

Ugh...I've been dealing with a rather interesting Doctors' debate over the last several days. All in all, I've got to have another surgery...then radiation and/or chemo...then possibly Antineoplastons. I need to back up though. I need to pretend like I don't know what's going to happen after this surgery. I just know that I'm going to have to get through the first step, then I can deal with the rest.

My surgery's set for Feb. 25th, and I'd love to hear from all of you guys around that time. I'll be up in Baltimore again, so anyone that has the slightest bit of time on their hands should feel more than welcome to come and visit me. It'll be a glorious time of wonder and enchantment (not guaranteed).

Well...so here I am, back at the beginning. It feels kins of terrible, but I know that I'm much better off now than where I was last year. I think that actually being there last year at this time would be far more terrible than this. So on that note, I'm going to go sulk for a bit. Then I'm going to stand up and brush myself off. What else can be done?

Right now I'm officially aboard the terminal patient freedom cruise liner

I think I finally decided that today, this day, i hopped on board the boat of terminal patient freedom. First of all, you get the swinging Sword of Damocles hanging over your head. If that's not enough, you have to deal with the unbridled bs of the insurance industry questioning why I decided to let my "experimental" treatment (remember: though it's not standard yet, it is in phase III clinical trials). I guess that's not good enough in a period in which High Grade Glioma patients have a hilariously short period of time to live. How does three more months matter if my hair's gone, I'm a skeleton with skin, I'm throwing up regularly, and worst of all, I live the dreaded existence of a poor little cancer patient. Three more months of that? No thanks. I'm good with what I've got.

"Why would he say that" you may find going through your mind, but the important fact that I've left out is simply that no known chemo or radiation treatment is a cure. If the docs could tell me, "Hey we'll do this and you have a 50% chance of being cured." I'd say, "Sign me up." They can't say that though. What they can say is that there's no cure. None of these treatments are curative. If I was in a business office and someone was selling me a device that couldn't even offer me a 50% chance of fixing my problem. In fact, there was no chance it would fix my problem. It would only worsen my life while lengthening the problem. Why in the hell would I buy it? Well I'm not buying it right now. What I will offer them, though, is the fact that I will do the fractionated radiation route, if it comes down to it. I'm far from ready to throw in the towel yet though.

Unfortunately, this notion comes with loads of insurance problems. It's all crap, and it's the last thing anybody actively battling a terminal illness needs. Cures are possible, especially with something as poorly understood as brain cancer, so why not let me try some possibilities out before relegating me to a pitiful five-year existence destined for the grave? Seems somewhat unfair if you ask me.

Where I stand as of today

Well it's been a rather stressful week (to say the least). I got to Houston thinking I knew everything that would happen and very little of it actually materialized.

In my first meeting with Dr. Joseph and Dr. Burzynski, we were essentially blown away with the suggestion that I essentially had to do some form of radiation. I wasn't prepared for that at all, but then we talked about it further (and after my blood pressure went from meandering turtle speed to the speed of a rabbit on meth), i actually gave some consideration to doing gamma knife surgery. It's a localized one day outpatient ordeal, and it leaves little to no side effects. "OK," I thought, "I'm gonna do it. I'll just have to go to MD Anderson, and they'll take care of it all. Right?" Wrong. They wouldn't do Gamma Knife without me first doing the much bigger, much longer, much scarier form of fractionated radiation (which I'm just not ready for...yet).

So then my stress levels sky rocketed into the Earth's orbit...again. I had no plan anymore, and furthermore, Burzynski didn't have much of a plan for me either. In short, I had nothing; back to the drawing board (which, by the way, is not where I wanted or expected to be so quickly). Then I met a very kind nurse named Rebecca through Email who heads up the St. Joseph Gamma Knife department. After relating to me that she fully understood what I was going through (one of her family members had had a brain tumor already), she assured me that although she couldn't guarantee anything because she wasn't the consultation doc, she could guarantee me that they would do the treatment without having done the fractionated stuff first. "What a relief," I thought.

From that point on, things have kind of slid on a much smoother plane today, but it was a rough week for sure. I thought my trip to Philly would be ruined. I thought about having to give up this class. I thought about lots of scary things, but for now, I think it'll all be ok...for a bit. I shouldn't let my guard down. You never know what could happen or when. Everything can be just fine, then BAM! your whole world is reeling. I think it'll all be OK. I just have to remember to breathe...

Lessons learned:

When life knocks you down, all you can do is brush yourself off, and stand back up--straight. No cursing or questioning's going to do much good. Just stand up straight. That's all we've got.

Like a rolling stone, I've got nothing to rely on

I've been in the pits today.

Life is rather bitter-sweet down here on Houston's watch. I love to see some of the folks at the Burzynski Clinic--but only so much. Everyone's SO nice and SO positive until I have to sit down and discuss my ACTUAL plan with my ACTUAL future. Then the niceness tends to give way to the realism (albeit a nicely expressed one) of my future (not quite so positive in the docs' eyes). It's always happiness tinged with the tension of not knowing my future. That and the assumption that there is no cure for this illness can be gleaned from just about any statement at any time; it's rather depressing. So much so that I've been in a rather dingy emotional place for the past 24 hours, and unfortunately, I don't really know what's caused it.

They're recommending that I do radiation now. With that "under my belt," I could be open to a much larger sea of salvation (so to speak). Avastin is rather risky business done sans radiation, opening up a person to some rather serious blood-vessel breakage, and I could also then do Burzynski's treatment du jour, Antineoplaston Therapy--but that's still two steps in the future, though. I have many other bridges to cross before I get there.

All in all, my future doesn't really look that bad; it's just not what I was expecting. I made plans to go to Philly that may have to be broken now--200 bucks down the drain. And I'm signed up for a course at Kennesaw that lasts a measly 2 months. I'm not breaking that off though. Not only is it expensive, but it's my damn life. A person can't just be a walking cancer patient forever. Even if I have to come back here in a few weeks, I will not be quitting that class.

What sucks the worst is that I feel fine. I come down here, and everyone's joyfully exclaiming, "Oh look at you. You look SO good." Inside I'm thinking, "Yeah, of course I do. I feel just fine dammit." Of course, I have to respond more politely than that; they're just being nice people. I DO appreciate that in the end (though after some serious reflection sometimes).

If Tuesday's going to be my day in the dumps, then I'm going to buy some hats. So that's where I'm left today. Life gives you lemons, so buy a hat. And that's what I did.

A momentary lapse of awareness

Well I guess it finally happened, or more precisely, damn it, it finally happened. I had a seizure yesterday. Of course it was the first day of the year (and my first seizure...boo), so I've already started it out with an extraordinary bang of sorts. I was in Athens for two nights seeing lots of old friends and meeting new ones all in the same go. Of course I had a few drinks both nights, got little sleep, and missed some of my medications, so I can't really blame it for happening to me. We were there for three total days and on the morning of the third, I got up to take some medication and went to the bathroom. Staring at myself in the mirror, I felt odd: light headed and like I was on the verge of losing consciousness. I put my hands down to brace myself then felt my legs give out. That's all I remember. When I came around my roommates, Josh and Max, eventually said I had had a seizure not long ago, and my best buddy Kevin was on his way down to help out as much as he could (he's a medic in the Navy, so that makes sense to me). I think it rather freaked them out, but natural to that state, I couldn't really help it. We got down to the hospital, and the doctor said everything looked really good (other than the gaping whole in my brain of course). Then we headed out and began our journey home.

For some reason that seizure had a rather profound affect on me. I didn't feel it, didn't experience it, but somehow, I feel different now. Strangely enough, when I was in the hospital, somehow I knew that's where I needed to be at the end of the day. I guess that's the path I'll be taking now. I'm going to start off with a brief Phlebotomy class and work my way up from there. In the end, I'd like to be an MRI tech. It's good money, and I'd have lots of other time to do things that I'm interested in. More than anything else, this plan has actually stuck with me for more than a fleeting moment (which is more than I can say for most of my other hair-brained schemes). Hey, they hospital's one of the few industries that's actually really growing right now, so I guess that's good.

While the plans a long way from coming into fruition, and I still have two more college courses to take, it seems pretty solid to me. Somehow as I was lying in the hospital bed that day for the umpteenth time in a few months, I realized that's what I wanted to do. I can work wherever I want, however I want, I can travel, or just work when they need me. It sounds like my ideal job...so far. There's more I'll have to learn about it as I dig into it further, but I'm fairly excited so far. Hopefully, I can convince these hospital folks to take me in with all this brain tumor business going on.