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.

With friends like these...

Carolynne (Rarebirds trailblazer and Mew co-owner) and I urging more folks to bid on the delightful work that Mew Gallery was offering for next to nothing

A room shot from Dan's camera

My benefit last Friday was an absolute success. My bandmate Bob and my friend Carolynne were largely responsible for gathering all the parties involved. We even had a nice turnout. Who could ask for more? I had great support from the Mew Gallery, Village Green Productions, and Anthropic Records. We had artists displaying their glorious (and ridiculously inexpensive) work, and performances by some stellar bands: Inperfect Silence, Controlled Storms, Monolith, Rarebirds, Grammar Debate, and Adam and Dave's Bloodline. I'd say my friends are all pretty great folks to say for sure. I couldn't leave there without a smile on my face and a bit of a tear in my eye.

This is Joe, one of the Village Green guys, in his band Grammar Debate

I had to add this one after seeing it. Bob, part art curator, part swell guy, and I amazed at the shocking vibrancy of the show.

Philly bound...again.

I've hastily decided to head up to Philly in order to show my face at a little benefit that's been worked out by some of my fantastic friends. If you want to read the official news on it, click here. All these people really are just wonderful, I really couldn't ask for anyone any better. Really.

So I'll be heading up there on Thursday. By Friday, I'll be able to park (hopefully) my brother's gigantic boat of an automobile up on those narrow city streets. We'll see how this works out in the end. Gulp. Ben'll actually be meeting me up there on Tuesday, so we'll be able to go out on the town that night. Then I'll be able to move much of my necessities back (like my bike, yay!). It should be a fun time. It usually is.

It's official: Goliath's back in his 3rd carnation

After a painfully long series of MRIs and PET scans, I've unfortunately discovered that the tumor is back for sure. It was uncertain in the MRI stages (which I guess is good considering the tumor should be VERY obvious on an MRI), but in the PET scan the contrast was definitely there. This giant's back to wreak a consequentially large amount of havoc on my life again. Two months go fast, huh?

Thankfully I have the best Doc squad on my side as of yet, and I'm planning on utilizing their efforts as much as possible. If my MGMT test comes back positive, then I could pull up some Temodar from the bottom of the Chemo barrel, and I should also be able to scrimp from a VEGF drug sampler that keeps tumors from sucking in arteries from it's surrounding area. There're other things that I can do yet, and if that doesn't work, then there's always the Antineoplastons. Let's just hope that this will work this time. Here we go again...

How do I love thee, let me count the ways

Well I have the flu...again.

It's just about the same thing that happened last time, too: full dose of Tarceva, bad facial rash, mouth sore(s) and an achy feverish flu on top. Though it may be the second time in just over a month, I'm wondering if I could be visited by the flu fairy just once more in the next month. Ah, how nice 'twould be. Alas, the doctors don't believe me, but as this is the 2nd occasion of the very same instantiation of this event, I must persist.

I think the Tarceva brings my immune system down at it's full dose. I mean I DO have like 4 different drugs, 2 prescribed vitamins and a slew of other assorted health keeper-uppers. Who knows what's going on with the massive chemo-cocktail my body's partaking in at the moment. I may just be morphing into another form of life; I may not even be human anymore (when the antennae appear, that'll get a blog). I'll keep bridging the gap between water striders and humans while you keep reading about it, ok?

Between a rock and a hard place

I heard back about my MRI today, and the radiologist who examined it said it was still rather inconclusive, but he was siding with a recurrence. He didn't just feel it out either. He used a series of large sciency-type words which I had little understanding of, and he said that though he couldn't say for sure what was happening up there, it looked to him like it was returning.

That's the bad news.

The good news is that at this point before my last surgery I had a significant increase in tumor activity. Now I have no actually visible tumor, just signs of its return--or so I think (this is all so damn complex and individualistic). So the radiologist informed me that I should definitely go ahead with the PET scan tomorrow. That'll reveal the hypermetabolic activity going on inside my broken head revealing the presence of the ill-fated tumor. In the end, I'll have to wait a few more days for more certain news.

That being said, I'm not through with this treatment program yet. Even if the tumor has recurred, then I can still add Temodar (standard primary brain tumor chemo) to the mix. It seems to have a synergistic relationship with the Phenylbuterate. In addition, I can add an anti-angiogenesis agent to the mix (which will require an injection every couple of weeks). We still have some more aggressive actions that we can take against my cerebral intruder. So I don't have a smile on my face at the moment, but I do have hope. I guess that's all that matters, too.

Say Cheese!

Since I've been back in Atlanta, I've been trying to comprehend the science of the camera flash, and I've come to realize that a truly good flash is one that can't be seen. It just fills in the dark areas. I've been utilizing my niece as photo centerpiece (she really doesn't seem to mind one bit). It still shocks me as to how permanent a fleeting moment can be in a seemingly random piece of fleeting photography. The image is there forever (or a much longer time than the moment at least). I can kind of understand how ancient peoples think you're stealing their soul with the camera. You kind of are, or at least a piece of it.

Now I'm back in Atlanta for a few months. Most strangely, it's my new (old) home again. Philly's usually a fantastic (and equally as terrible) place to live, but I'm going to miss living there. The last 4 and a half years have been a wild ride to say the least, but I love my friends there. Even though at times it does just feel like no more than a complex adult playground. There are important things going on there obviously. I guess I just need to stay more tuned into them than I have been wherever I may be.

Back in Philly...

It's so weird to keep leaving and coming back here. Sometimes I feel like I never left while simultaneously feeling like I haven't been here in ages. I don't think I've seen the Taproom folks in quite some time now--maybe like 3 months or more. It must be my fate to have this curse of a mass of perpetually growing cells in my brain, though. Time just seems to slip away as my priorities keep changing. Enjoy it while you can, c'est la vie.

Pills, pills and...more pills?

I realized that it had been a while since I posted last, so I thought I should post as an ever living record of my newly won cancer indebtedness to pills, i.e. taking lots of 'em. My pill times are with meals, one in between lunch and dinner and once before bed. I've done some of the math, and it seems like I'm taking about 50 pills/day which is actually not that bad compared to some people I've heard about. This older man that I met while in Houston who was actually heading down the Antineoplaston route (by the way, his tumor was just reported to have shrunk 27% which is so great for him) had a pair of shelves just for his pills. He set timers for when to take them AND had his wife recording and administering the entirety of his therapy. Now I can see why Cancer's such a strong supporter of the American medical system. How else could you sell people secondary drugs to relieve them of symptoms resulting from primary drugs that fight off their cancer. Pure genius! Now we just have to figure out how to get them on tertiary drugs... I don't have to deal with all that though, all I have to do is remember to take the pills at the proper time during the day, and I've done my job. This version is SO much better than the Antineoplaston version. I'd have to have a buddy for that one, but we'll see how this goes.

Which reminds me, everything I've been doing for October and November comes to a head on November 30th with my MRI/Oncology appointment in Atlanta. I'm already nervous as Hell about it, and we haven't even had turkey yet. I'm starting to sweat as I type, so I'm going to avoid thinking about that as long as possible again. So as I was saying, life's fairly easy right now. Just take the pills. That's it.

course correction

Well apparently because of my lack of foresight, my flight back up to Philly has to wait until Friday the 13th. I should've gotten my flight earlier. Great. Now I have to fly on Friday the 13th. I hope I don't sit next to a guy in a hockey mask or with a really big metal claw. I'd be really uncomfortable if that happened.

Anyway, sorry guys. I'll see you soon.