So much vomitting, so little time

No pictures, no videos, no motivation. I haven't had a chance to write, photograph, tape, or anything else lately as I've been vomiting too much while my head's had little painful trolls dancing on it. I even think I could throw up right now (too much info?...maybe). 

Enough negativity. It's been quite a six week (is that really how long it's been? seems much longer) venture. I went through 10-14 days (who knows? Not me; I know that much) of being stuck in a strange land full of foggy people and bad television. What brought me back was a new chemo schedule that was built on a platform of only once a day maintenance (rather than the wonderfully inconvenient plan of twice daily). Everything was fine (albeit in a wake-up-hit-by-a-truck kind of way). I'm going to pause here and let you know that, though I tried to end the negativity, there's still more coming. This was just until I got sick (or thought I was) a couple weeks ago and could not get over it. Now this happened before mind you. My immune system gets depleted from the chemo, and I can't do anything to heal. I've had a cat scratch on my ring finger for weeks. The infiltrating infection has just recently healed. Anyway to make a long story significantly shorter, I come to find that I'm not sick and that it's probably just side-effects from one of the drugs I'm on (probably the Celebrex, but could be the Claravis though), i.e., this won't go away on it's own...ever. That wasn't the best realization.

So I'm flying back up to Philly tomorrow. Have lots of band things to attend to, but I'll try to see everyone if I can get up the willpower. I'll be staying at Erin's place on the fringe of No. Libs, so I'll try to stop by down south later in the week.    

For Jean-Michel Chappe

Yesterday I found out that one of my Imerman Angels email fighters, Jean-Michel Chappe (pronounced shap-ay) had died from brain tumor complications. We didn't know each other very well, but I know he was devoted to his children and wife, and he fought with all his might (of course, as with most of the afflicted, to no avail). This is the story so commonly told about those of us diagnosed with cancer (and brain cancer in particular). We live are suddenly confronted with headaches, nausea, and/or seizures, get diagnosed with a high-grade mass in our heads, and before we know it, end up withering away.

Fortunately, his wife let me know that he died quickly while he was unconscious. This is the most comfortable way any of us can hope to end our physical struggle. Click. Lights out. As with most ways of dying, the body's processes degenerate and a formerly simple problem turns into a currently life-threatening one.

I told his wife how sorry I am, and that I wish I had known him better. I don't know what he would've wanted, so this is my tribute to him, though. I wish I could write one for everyone else that's fought so hard only to have their life ripped out from under them. In these horrific circumstances, it's the least I can do.

To end on a positive note, we're all here struggling against something, some place, some time or person. Not everyone can see the direct connection between their struggle and the succession of experiences here, but we can. Whether or not we're cursed with this affliction, I don't feel like I'm living day to day any differently than anyone else. If I wasn't worrying or fretting about this, it was and would easily be something else.

Okay, enough of this cheesiness...   

Two weeks later...

Well the last two weeks have been, well, unmemorable in that I remember very little of them. First, I started on all my pills which as I had forgotten (or more likely, hidden from waking memory) were quite difficult for my body to acclimate itself to. First of all, I started feeling sick--really sick, and all the time. The problem with this (especially when you're taking a literal handful of pills every day) is that you don't really want to take the literal handful of pills. So taking those every 6 hours became an exhausting chore. 

Then the peeling started, and by this, I mean on my face. My nose and the skin next to it began quickly peeling off. Then the skin on my lips began drying out like they were being slow-baked all day. Ugh, the corners of my mouth still hurt from being dry and raw. This is a nasty side effect of the Accutane, I'm sure.

Alas the dizziness hasn't stopped. I haven't fallen yet, but I fear that day may be close approaching. I'm re-reading The Brain That Changes Itself right now, and it's about a woman called Cheryl who is a wobbler. She almost completely lacks the ability to keep herself upright. She's got to hold onto a wall or post to keep herself upright. Otherwise, she constantly falling. Even when she hits the ground a hole opens up and swallows her. 

What's amazing is that a forward-thinking Neuroscientist, Paul Bach-y-Rita, wondered if he could stabilize her by sending signals of her stature to her, get this, tongue. Upon the first day of the experiment. The woman was kept upright with no sense of balance problems for 20 minutes! Then afterward she had a kind of layover for about twenty seconds. Upon further use of the device, she kept standing for longer and longer until to everyone's surprise, she didn't need it anymore. To find out all the tantalizing details of how and why this happened, you'll have to read the book. It's quite miraculous. 

So to keep this entry from being dark and black, I have to end on a good note. And I have a good one to end on. I feel good today. I've decided that the ketogenic diet can wait. I'm having enough trouble the way it is right now. I don't want to throw something else in the mix to knock me on my ass again. I also want to be able to have some inkling of desire to get up and go work out or hang out with friends (which I've had no desire to even call anyone I know here yet). So, like always, I need to brush my clothes off and reorient myself to this new (or revisited) place in which I am at the moment. 

Oh yeah, this is how the beginning was...

Yep. This is how I look in the morning. 

But on my behalf, I did start Temodar at 6 am. As you can see by the energetic expression on my face, I didn't feel very well (to say the least). I got up at 6 am to begrudgingly feed my cat (as I do most mornings). Then after sluggishly surmounting the staircase, I decided to start the clock of my Temodar regimen. 

Other than feeling half-witted this morning, it felt good to begin what could either be the beginning or end phase of treatment. Hopefully, this will kill the tumor in my head, but due to the many blogs I've read regarding individuals in the same boat, this may just be one more phase in a slowly descending spiral to my ultimate decline, but that being said, I'm not ready to go quietly into this good night, my friends. No, if I'm gonna lose this battle, I'm at least going out with a fight.

My friend Kevin and I were talking on the way back up to Philly the other day. It was the first time that we had talked since his recent deployment to the battlefield in Afghanistan. I realized then that we actually have much in common. His enemies are external and numerous while my enemies are internal and constantly proliferating. We both have wars to fight. He's fighting his over there while I'm fighting mine right here. Kev's a bigger man, though. He's a medic out in a foreign land facing the terrors of the battlefield to save his comrades from the horrifying conditions they all assume while I'm just trying to save myself from a distinctly unenlightened gang of wayward cells. I get to fight my war in my house. Kev has to be in lonely foreign territory for his fight.      

I feel like the new dealer in the 'hood...

Jeez...I feel like a brand new neighborhood drug dealer. Let's just put it this way, as I was walking out of Walgreens, I had so many drugs that I couldn't carry them all. My mom had to carry the half-crate of Temodar that was questionably dangling from my hand. Too much, too much.

So here's the rundown of what I'm on:

Temodar- 40 mg twice per day
Chloroquine- 250 mg
Celebrex- 200 mg
Accutane- 60 mg twice per day

As of today, I'm prepped to start taking the Accutane. I'm doing this in stages so that I can see if, for example, the Celebrex causes me to have strange heart symptoms such as convulsive heart failure, and the Accutane could cause me to develop strange rashes and other sorts of odd skin problems; strange in that it's supposed to clear up acne...? Then I start on the chemo on Saturday. That's when I hit the ground running.


I'm also staying on the leviteracetem but on a smaller dose (just 1000 mg). I want to get on an even smaller dose, but I'll just wait until my body's producing vast quantities of ketone bodies to help me not to fall into a fit.

The fifth corner (you know, the secret one) of my four corners protocol is this agent called Lauricidin. One of the gents who's been helping me along with my Poly MVA protocol has recommended it. There is some evidence that the cytomegalovirus (that we all, unfortunately, have crawling through our bodies) either causes or infects brain tumor cells and could potentially cause further problems. Brain cancer: What a complicated wonder, right? (This is the positive way of putting what I'm thinking right now). Anyway, I'm taking this because it is anti-viral. I don't know that anti-virals exist, so I'm kind of researching whether they exist in the first place, and I'm just taking it (because it's fairly cheap) until I find out otherwise.

Well that's it, so far. We'll see how this goes...

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.