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.

The road back to Philly for a bit...

This is Jay pondering the flight of the road, but you should just pretend that it's me. Believe me, it'll fit the context better.

So the headaches are still with me, and as some of my most friendly of folks have been telling me, it's just the same feeling as medicine working on tumor cells rather than tumor cells growing. So that's what it is, I just have to think it and stay far away from return-of-the-tumor territory. It's a nasty place to be.

I'm heading back to Philly on Nov 10th. i can't believe i haven't been there in over a month. The road really flies by me..still. It seems that there's nothing i can do to avoid it, like it's merely a product of the years slowly accumulating. Ok see you soon...

Never been so glad to have a headache

Just as soon as my Swine Flu/Thrush epidemic passed me by, the next one had already taken me over. Daily mild to moderate headaches have been my latest encounter. A guy can't really catch a break here, can he? I wasn't very worried at first. I figured it was flu leftovers or something else mundane. Unfortunately by this morning, I had become concerned that it was a bad sign--a sign that the tumor was coming back. Needless to say, this notion was not a happy one.

Fortunately though, I talked with my doctor this morning and she put my fears at ease. Apparently, mild to moderate headaches can actually be a good sign. There's a good chance that it's actually tumor breaking apart or shifting around. The problem with brain cancer (and maybe all cancers, too) is that swelling accompanies any physical changes that occur. Cancer growing, shrinking or even just shifting causes swelling. Basically it's too bad for me as I have no idea what's causing the headache, but I'm hoping that my docs are right, and it's due to shrinking or shifting. Anyway, it's just more Tylenol to get rid of the headaches. Hopefully, that's all this will take.

Blisters fleeing, food I'm eating

It's been for about two days that I've been able to eat anything not suited to a blender, and it feels really great. I had a fairly normal lunch, and I'm looking forward to the solid food of my days ahead. Who knows what dinner may bring?

Anyway this message is just to let you concerned (and so sweet) folks know that I'm doing much better at this point in time. It was a long week, but we got through it, eh? I do have to admit that mouth sores are a nasty bunch, and I hope I don't have that experience again for quite a while. I don't know when they'll have me back on the Tarceva, but it'll be in a half-dose to start working up to a dose that I can handle much better than the last one. That was a rather terrifying dose if you ask me, hopefully we can find something a bit easier to handle than that.

Oh and by the way, I didn't draw that pic of the blender. I would've chosen a much different (better) color scheme.

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.