You see, this is what I wanted to avoid

Well I awoke this morning feeling a bit better again, less symptomatic, no unusual noises emanating from my body, but most importantly, my mouth sores were slightly better. I can swallow with little pain today, yay!

Now here I am monitoring my heart rate and taking my blood pressure because my heart rate is 135. I noticed it when I first woke up that my heart rate was higher than usual, and now they want me to go to the ER. The problem with this situation is that I hate ERs, and I really don't like being in hospitals more than I have to be. So should I go then? They're just going to give me more drugs. On top of my towering regimen of drug consumption, I don't need any more of that crap. I'm tired of drugs. This is the whole thing I wanted to avoid in the first place. Once you put one foot in, they take your whole body and tell you that, "Its for the best."

I have brain cancer and all I get is this stupid case of Swine Flu

So let me start at the beginning. Houston has a problem that us non-Houstonians are unfamiliar with. They keep things ridiculously cold. It'll be a hot, humid summer day and everyone's walking around in pants and jackets like it's crisp fall weather (I must say that, as Atlantans, we felt like Yanks for not being familiar with this). The problem with this situation is that upon entering a building it was absolutely freezing inside. Not expecting this as a city-wide behavior (at first, we thought it was just a few of the wealthier thermostat happy buildings), we didn't learn to expect it until shortly before we left.

So the reason why I'm writing about all of this is to inform you about the extensive temperature interior/exterior variation differentials occurring among Houstonians in their dwellings. Kidding, that sounds really boring. Its that I don't think it's healthy to have so much extreme hot/extreme cold change per day. I think this may be where the trouble started. Sweating in the sun, then freezing for a few hours in an office aren't the most appropriate ways to maintain a healthy immune system.

After getting on all my medication, the last one had the most side effects. Rash--like the beautiful one I'm exhibiting above--was basically guaranteed. So after taking all the medication for a few days, the rash began to appear around my shoulders. They said it was a good thing that I was getting the rash, and I should just sit back and enjoy the ride. So I took that as a good sign and within a few days, we were heading back to Atlanta.

I noticed the sores in my mouth shortly after the rash showed up. But they got worse and worse, and now they're so bad that I can't speak, eat or swallow anything without enduring tidal waves of pain. Now I just answer yes and no questions to everyone as much as possible. But I've gotten ahead of myself here. So yesterday my Dad and I discovered that Oral Thrush is fairly common in people in my situation. Then we discovered that the sores were white and of course, so were mine. So we needed to go to the doc-in-the-box down the street for a quick medication prescription that I desperately needed. The doc said that the sores in my mouth didn't look exactly like the ones that he was accustomed to seeing. So they jammed an elongated q-tip up my nose then scraped some of my sores with a separate one to get test results. When they came back, it turned out that I had Swine Flu compounded by a horrible Oral Thrush outbreak. I got to leave that building with a nice little facial mask on.

Positive Note: I won't have to deal with any mouth sore crap with the future use of this medication, which is great because I'm getting really tired of it by now.

Back to the dramatic storyline...

This is a picture of from the left, Dr. Joseph, me, Dr. Burzynski, Dr. Weaver, and my dad. It was roughly my last day, and its a great little souvenir regardless of the outcome here. I'm really glad I took it, too--just us and the docs.

This program has been far from easy, though. I've developed a rash all over my face and chest. It looks kind of like a seriously bad case of acne, so unfortunately I'm taking an unwanted trip back to the dredges of 8th grader-dom. It's pretty bad though. I'm losing skin on top of that, too. Don't ask me why. I'm pretty sure my body hates me. With my vast array of medicinal products, I won't need to eat anymore, just take more medicine.

Why have I been so behind on everything lately?

OK so my Aunt wrote me an email recently about my terrible lack of updating on this blog. I don't know what happened. I used to be so good at all of this...?

Unfortunately, I do know what happened. Reality set in. You see, the reason that I've been virtually non-existent (in many different ways) is that the reality of my situation has set in. Before I relied on the principal that this tumor was an accident of sorts. Of course, I never intentionally had the tumor. It was an accident. I just had to get through the situation, then everything would be normal. Of course, this wasn't the situation...

Then it slowly set in, beginning with the tumor's recurrence. At that point, I realized that this was no mistake, it was real and really deadly. One thing that I've always avoided averring on this blog is the numbers I'm facing. Whenever I've said that the doctors weren't giving me very good numbers, what I've meant is that, in their eyes, I only have three to five years to live (and that's with their radiation and chemo treatment program). I'm dead; there's nothing to be done. That's rather sad, I think. Having children and settling down would have been nice at some point.

So this is why I've been a big ol' loner lately. One thing I've learned here is that I'm not dead, like the docs would have me to think. There are things that I can do to survive this. I just have to find them. Unfortunately they're hidden amongst other things that won't work for me. So I have to develop a plan of action. Finish Burzynski, if that doesn't work, go elsewhere, if that doesn't work, go somewhere else. I will beat this thing, but it may take a bit more time than I was originally thinking.

(Oh and by the way, if you take a look at the picture above, take a closer look at the little quote underneath the sign. These little things help.)

More surgical comics!

So I believe that this masterpiece was created not too long after I started the first. Probably sometime shortly after my major surgical operation. You know there's really nothing to do in a hospital except sleep for many a day (which I did, in fact, do).

Finally. And here's some pleasant news

So I finally got the word from my kind team of docs at the Burzynski Clinic today. They had the final word from my MRI that I got two days ago as well as the PET scan that I got yesterday (a word of note: the PET scan is equivalent to forty x-rays. Docs don't usually relate this info to their woefully uninformed patients either.) The MRI showed little to nothing in terms of new growth. There were a few questionable spots but things are pointing to post-surgical changes rather than any new growth. Then I got a PET scan to check the metabolic activity of the cells. That too looked like any possible growth in the questionable areas was post-surgical change. So things are looking on the up right now.

As great as this sounds, it doesn't in any way mean that I'm in regression yet. I know the tumor's in there. After the word I got from my last pathology report, this is fantastic news, but not quite so good for my treatment plan, though. Because I'm still not showing 5mm of growth, I remain unqualified to do any of the rigorous antineoplaston lifestyle right now, but I can still do the targeted gene therapy. So that's what I'm putting my money on-literally. I got the first drug today, and I'll be adding them in over the next few days. Then I'll be heading back to Atlanta late next week. I don't know what'll happen after that, but I'll post it as I think of it...

(I've) grown tired of all this cancer mess

It's been a little over ten months that I've been dealing with this load of cancer crap. Ten months down; ten months to waste. Well...if that isn't a terribly negative thought, then I'm forbidden from accessing such a thing.

Actually contrary to what I said in the last paragraph, I'm doing much better than I was. After being fairly slumped over for the past few weeks, I think things are looking better than the last few weeks. Sometimes I get bogged down into negative trains of thought such as the infamous statement above, but I'm slowly regaining my will to keep my head held high. Hopefully, I'll be keeping things on this note for a bit.

An additional blog for an exhausting day

This was it. I thought that today would be one of those early to rise, early to bed type of days, but alas 'tis not the case. Why would it not be? (Wow, thanks for your heightened personal opinion of this writing.) Today was going to be a bit much from the start: an 8am phone call with an expensive researcher immediately followed by a trip unawares to the local Burzynski clinic. It turned into a full day, though. I didn't get back into my room until 10pm. Now I know you busy folks out there may be pontificating, "That's not so bad, I do that most days." I know I used to be one of you. Oh and I took 10mg of Melatonin the night before. That'll keep you asleep all day.

Anyway, not to be totally vindicating myself (although I don't want to come off as a total wuss either), today was an interesting albeit somewhat disheartening day. So what's the deal then? I essentially have two options here. The first option is targeted gene therapy. It's essentially a treatment plan involving my own blood and several cancer biomarkers.

The treatment goes like this: My blood is taken (Yet again. I don't think I even feel it anymore), and it's tested for several markers that determine the specific oncogenes (those little cancer-promoting rapscallions) that my particular tumor expresses. Then if I do have a tendency for over expressed oncogenes, they'll scientifically formulate a proper list of ever-efficacious drugs for me to take that would ideally kill off any remaining tumor cells. I take some pills, and I may have to go get a shot each week. Oh and this is the easy way.

If I don't over express any oncogenes, then I'd need to do things the hard way. I'll need to turn to the Antineoplaston lifestyle. This is no simple drug, it is a lifestyle (albeit one that could save my life). Let me explain it to you. First, I'll have to have a catheter inserted into my sub-clavicle (for those of unexposed to bone speak, it's your collar bone). Then I'll be essentially taught how to be my own nurse. There will be a small 4lb. pump that will require a constant 24 hour connection. Connected to this pump will be two bags in a convenient little case that holds my synthetic pee residue. (Really. It's derived from human urine. Don't worry, it doesn't smell like it anymore...much.) These are two large liter-sized bottles. I'll go through three of those in six of my four-hour episodes. On top of this, I'll have to learn how to spike my own bottles to avoid pumping air into a major artery of mine, sanitize my catheter every time I reconnect the tubing, clean it out every three to five days, and draw my own blood via catheter every two days. This will be analyzed and faxed to Burzysnki to be interpreted by his hi octane staff of Houston docs. Oh and on top of all that, this will be a process that could take up to a year. Yay!

Surgical comics!

I started drawing this comic shortly before my last surgery amidst intensive foot traffic at 30th street station.

I think I finally finished it a couple nights later. Sadly, that whole time is rather elusive for me to think back on. I don't know if it was the fault of the anesthetics or what, but I feel like I'm having someone else's memories. Very bizarre. Only lately do I even feel remotely normal again. Sometimes I think I forget how strange this whole brain surgery operation makes me feel. I just want it to fall away from memory behind me. The quicker the better.

A word about this conundrum

Hi guys. I'm doing well, I promise. Though none of you would probably know it right now. I've been feeling rather self-absorbed of late and have had absolutely no mind to really hang with anyone. That being said, I do miss seeing and hearing from all of you, but I'm simply rather content to focus on myself right now. That's all.

This whole brain cancer scenario just doesn't seem to carry the hope of life-exercisation like I'd hoped, so I'm a bit on the depressed side right now. It's not that I'm horribly depressed just a bit bummed out. Hopefully this whole train of thought will fade into the distance in the next couple of weeks.

I've kind of been stuck in between which way to take things of late. Go with one more alt method, or stick with the no-cure hospital approach? It's a tough decision to make, but I'm supposed to make it soon. Really I should have already made my decision. Everything has to happen so fast in this game, and I'm not very good at thinking and acting quickly. Oh well. No time like the present, eh?

TIme for the stapels to come out, finally...

Well it's been a little over two weeks since the surgery. (Though I don't feel like I can hardly even recognize that it's been a week since then. I actually feel like this whole ordeal has happened to someone else, and I don't know why or how it happened to them. I feel fairly removed from it all oddly enough.) Anyway, so here I am with a train track style of staples going on around my head. Of course, I'm certainly ready to have them out. It seems like this round of razors on the head would be undesirable (which of course, they are), but this time it seems like the staple line is less within my perception than it was before. It doesn't seem to really bother me quite as much as it did before.

I guess it's kind of weird, but I guess I'm just thinking about other things more than the surgery right now. It's kind of a moot point, I guess. Surgery or not, I should be moving on from things right now. I guess my whole problem with this thing is that the craziness of the surgery should ideally be gone by now, but it's not. Surgery's just another way for me to get into the same boat that I should've originally gotten into. The only problem is that I didn't ever get into that boat, so now I feel like I'm sort of stuck here getting pointless surgeries that just keep putting me right back where I was a few months ago.

Certainly though, the most important thing is that I am OK right now. Until the point when my health begins to fade, I will always have that to have utmost thanks for. Hopefully, I can keep that terrible day on the horizon as long as possible. Until then, I'll always have tomorrow to look forward to for a possible cure for this terrible illness.

A week and some change after the fact

I think it's been a week now? Hasn't it? Well regardless, it's has been a very different experience for me this whole time around. Maybe it's the whole, "two brain surgeries in 6 months" ordeal, but i feel totally different right now. For the first week after surgery, I LITERALLY didn't do anything. I think I woke up occasionally, moved around a little, then passed back out. Wasn't very fun. Nor did it really engender any important meanings into my life at the time. Now for the last few days, I've been up more, although not a whole lot, and just kind of meandering a bit. Thankfully, I 've been eating more since that whole episode was a bit uncomfortable to watch, but I think it's over now. Now I just have to get back to working out, living like a usual person, and learning how to kick some cancer butt.

I started taking Melatonin the other night. Wow. It really hits you hard, too. I haven't had this low energy for some time now, but it's really supposed to be useful in some form or other, so I don't really have a choice about whether or not to take it. Here goes to days on extremely high doses of low wakefulness.

So as of right now, I'm looking into doing a treatment camp at Upitt for a year or so then also maybe Germany/Mexico, too. I'm not sure which one's will actually turn out, though. The only thing that may work for me is the standard chemo/radiation which I'm not one for at the moment, but we all saw what just happened, so I can't really go on to NOT do anything right now. I gotta keep hitting it hard with everything I've got right now.

And so, for all of you lovely folks out there, I will keep up with you. I just need a few more days to get life back into some kind of recognizable role here. Of course, I appreciate all your care as well. Talk soon.

Update

Hi All, a friend of Dave's here. 

I just got to talk to Dave for the first time since his surgery! He asked that I post something here to let everyone know that the surgery went very, very well. He has been extremely tired since, so he doesn't quite have the energy to post anything yet, but he will soon. 

He says he is very appreciative of everyone's thoughts and prayers... and he will be in touch soon.

Yay, Dave! We love you!

Ok, so now I have to wait two more days

Well, so I got a call from my doc this morning and he requested that my surgery be postponed until Friday. He said that he wanted to ensure that he could have his A team at hand for the surgery. Now there seem to be a few different ways that I can interpret such news:

Perspective A:
This surgery is so much more dangerous than the average brain surgery that the surgeon fully requires his top staff to feel utmost comfort with it. Other brain surgeries can get by with the B and C tams, but mine of course, only works with the A team.

Perspective B:
This was really an elaborate ploy devised to get me to move my surgery date to make room for a more time-sensitive case. Now this isn't so bad. Certainly, if I desperately needed surgery, I'd hope that someone would give up their slot for me.

Perspective C (the most likely interpretation):
Dr. Quinones really dislikes operating without his top staff on hand. Maybe someone's sick that day...I don't know what that means for anyone else having surgery on Wednesday, but I think it's probably the best for me.

Anyway, this was all an elaborate way to tell you that I'll be having surgery on Friday rather than Wednesday. Thank you all for your heartfelt messages and please keep me in your thoughts. I'll see you soon...

The worst week ever...

This has been the worst week on record, I do believe. There have been so many of my worst weeks ever, but I do think that this one clearly takes the cake.

First, I lost my little kitten, Don Caballero, aka Mr. Man, aka Manny. That's the adorable little rascal above. So sad. He apparently was born with a virus that destroys white blood cells. At the time that I took him into the emergency room, he was convulsing and barely breathing. He didn't stand a chance. He was a cute little guy though. At least I got to be there when they put him down. It brings tears to my eyes just thinking about it.

THEN the next morning as I was on my way to get some bloodwork done in Jersey, I managed to total my car. That's right, no more than 24 hours after my kitten dies, my car goes, too! I wish I had a picture of it, the poor guy was pretty mangled in the front.

So let's see, where am I in all of this? Brain tumor in December, dead kitten and totaled car in July. I hope this isn't going to be the trend that the rest of this year follows. If so, you may want to keep your distance from me when you see me out lest you spontaneously burst into flames.

The beast is back and what I plan to do about it

This is my personified conception of the rogue rascal running around in my brain causing God knows what kind of havoc wreaking destruction on all. He's a mischievous little rapscallion with no good on his mutated mind and malevolent shenanigans up his sleeves. Oh and I officially hate him.

So unfortunately today's the day that I solidified the date for my next brain surgery confrontation. Next Wednesday, August 5 is D-day part II: the return of the scalpel. I'll be getting this, the next in the series of my lobotomies, at Johns-Hopkins Bayview. For a hospital, it's pretty nice i guess...for a hospital. Wish me luck, send me happy thoughts, pray for me, dance around a fire or whatever you do in lieu of physically efficacious actions, but do it for me. I'd also really appreciate anyone's phone calls or happy-themed emails as well. This can get rather lonely.

By the way, I hate hospitals. I don't like being confined to cold hard beds, I guess. Being confined to a cold, hard bed isn't exactly my idea of a hot date, and the feeling of waking up after being throughly gassed and knocked out cold for five hours is just about the worst thing I can think of. So really, It'd be great to hear from you guys during all this.

Well, here I go...

The return of Goliath

I really didn't want to hear the words, "Well it looks like it's back," nor did I want to hear, "Roughly about 40%." Crude words. I can think of some other crude words that I'd like to retort with, though I won't be posting them here. It's true, he's back. The struggle must continue. The diet didn't work as I'd hoped. My neurosurgeon is recommending another surgery, to remove as much as possible, followed by the standard of care—radiation and chemo. Not good alright.

It looks like I may just have to change my game plan—or at least the smoldering remains of what once was.

So where does that leave me? What do I do? Where do I go? Honestly, I’d really like to take a road trip. Ah, the great American road trip—it’s one of my favorite things ever. I can see my hair blowing in the wind, my charred skin—burnt by the sun—on one arm dangling out the door, windows dropped, music blaring but only the shrillest vocal bellows and tinniest cymbal crashes can break through the deafening roar of the wind storming through the windows. Nowhere to be, and nothing in particular to do—that’s what I’d like to be doing right now. Not this. I’m tired of dealing with this nonsense. I want off this ride; it’s lost its appeal, if it ever had one. Now I just want to go, to run, to hide, to find a place untouched by human hands and intentions. I want to be alone, yet I want my loved ones with me, but no more of this. No more doctors or physicians assistants, no more radiation or drugs, just sunlight and trees and a gentle uplifting breeze. I know it’s a no place—a utopia—but it’s where I’d like to be ideally. My vision of heaven, if you will.

Here's to indecipherable medical jargon

Well thanks to some indecipherable medical terminology, I find myself back in the proverbial hot seat. Dr. Re, my kind-hearted neurologist, hasn't been able to say whether my MRI shows any new growth or not--something about around the edges of the resection cavity. He said it could be "insert technical mumbo jumbo here" or it could possibly be necrosis, but he wasn't fully able to say, "no sir there's no tumor."

So he sent the Radiologist's notes up to John's-Hopkins, and hopefully, they'll be calling me back in a few days with their own thoughts on the matter. They'll probably want to see the original scans which I'm fully prepared to send them. Most important though, is that I keep myself from freaking out this whole time.

You see, hospitals operate in two worlds. First is the urgent world of medicine where everything should happen smoothly, flawlessly and painlessly. Everything also happens exactly one day in the past in this world. So as soon as a Doc orders something he/she comes to find out that it did in fact already happen yesterday. The second world is the REAL world where things get lost, people get pissy because they were up all night arguing with their boyfriends or wives, scheduling errors occur more frequently than should be permitted and so on. Necessary events and procedures occur exactly two weeks after they should. So when the Doc says, "You should've had that scan yesterday," it actually happens two weeks from yesterday.

Since the real world tends to rule the roost in hospital land, I'm actually probably going to have to wait about two weeks before I even hear anything from these folks. Well, I guess it's time for some of those mental conditioning exercises all those religious leaders have been going on and on about over the last several millenia...

Just a smidgen of good news

Well I'm still waiting to hear back from my Neurologist down in Marietta, but I'm hoping that the scans will come up clean. Psst. You wanna know a secret? I have the CD with the scans on it, but I'm too afraid to look at it. Besides it only works on Windows machines. Who uses one of those infernal virus-sucking contraptions anymore anyway? (HA!)

But the real good news is that, after speaking with an Oncologist up at Mayo, I've come to learn that I'm not the only young bearer of a brain tumor to forego chemo and radiation and move on straight to expectant care. (Which is so called because Doctors are 'expecting' the tumor's arrival back in my body, so they test with MRI's rather frequently. Nice.) He said that he had a hand full of patients that were, like me, young, and diagnosed with a completely resected grade III tumor, and get this, they were doing just fine! Apparently, I'm not the only one who fears that Twelve cycles of chemo and a continued dousing of barely sub-fatal doses of radiation may not be the best route for a body desiring to continue with life.

Anyway, it was a HUGE relief to see those words coming from a renowned Oncologist at the top of his game. Before I felt like the only idiot stupid enough to disobey Doctor's orders; now I realize that there're a few of us out there. Knowing that a group of like-minded folks is out there makes me feel like I can beat this thing, and if there's a group of people out there that can beat this, then I know I certainly can too.

Two days and counting...

Here I am back in Philly. Sometimes it feels like I'm dreaming a dream about my doppelganger living my life in an alternate universe. It's kind of surreal but kind of really real at the same time.

So I'm settling in, but this time I feel like I have a goal, a very real goal--to keep myself grounded and focused. I guess I never really had that before. Always striving for the next thing, stressing over this then that, I never really gave myself much leeway in the pursuit of peace. I had to succeed, had to strive harder. I just knew that I could handle anything that I threw at myself. In some ways I did. In other ways, I failed miserably.

Now here I am, back in the City of Brotherly Love, but with a mission of health and wholeness. Unlike the fractured, jagged and ultimately unfullfilling life I once led, I now have to chart a new and different course...