More cyborgian activities

Well this is from my phone. Today in about an hour, I'm going to get a port put in.  For those of you that don't know (I know I sure didn't) what a port is. It's short for portacatheter. That word is definitely not spelled right. It's just a little place under the skin of my chest where the phlebotomists can stick me in place of an IV. Thankfully I won't have to deal with this phlebitis which is just horribly swollen veins. So this will be the end of that for me. Oh it will also be the end of my non-mutated cybernetic days.

My blog titles are silly

Okay okay...so this is my latest update. Oddly though, I don't really visit blogger that much any more, which is definitely a good thing considering that it's just because this brain cancer battle is going so well. I mean to be on three different chemotherapeutic drugs and have your own doctor say that after 9 months, "you don't even look like you're on chemo." I'm pretty happy with the current state of affairs...not to mention lucky that I'm so young and my body can brush most of this junk aside.

I just returned from a checkup at Duke, and after this much time, I was prepared to get the bad news. You know how it goes, "Oh we're so sorry, but it appears that the tumor has stopped responding to the chemo and has started slowly taking over your brain...again!" (Ugh). But alas, this scenario has been staved off for yet another 2 months (and hopefully maybe never again.)

The doctor came in to my room glowing and for that I'm just ecstatic. She said something about how I can't be included in the Polio virus immunotherapy trial at Duke due to too many operations, a shunt that could potentially transfer it into my abdominal cavity, and generally a less-than-acceptable blood-brain barrier. She said she'd fight for me though, because apparently, this trial has seen some great results. So for all of you patients looking for a potential curative agent (I'm pretty sure we can all agree that's everyone with any of the copious varieties of brain tumors). I do believe though, that all we can say is that this should be an interesting experiment to watch, and (hopefully) I can get myself in on it.
  
We will see though. I do hope that I can rid myself of the brain tumor, this time, with this medication.  Then as far as I can tell, hopefully there will be yet another treatment out that that will get just a little closer to causing the tumor to retreat. This is all I can hope for. Because, though I know that I'm saying a proverbial quote here, but without health, where is life?

Another win for me…Dave (UPDATE! )

Well I just got back from Duke Medical Center, and I have to say that my MRI looked pretty darn impressive, if I do say so myself. I haven’t seen a scan have that little to say regarding cancer since…well, I didn’t have a brain tumor (which seems like oh so long ago). There was generally less contrast on the image (especially around my squished cerebellum) which is great. Lets get that guy outta there, then maybe I can have another surgery and scrape the rest out. Maybe I’ll end up being the person with the largest number of craniotomies….probably not, I probably have a really, really long way to go until I get to that point...

That's what I was writing yesterday when my Dad and I were on the road and I was caught up in an emotional high from being at Duke (in beautiful North Carolina, I might add). Now I feel tired, tired but satisfied, satisfied that I could take almost five entire weeks off (minus the Avastin at week 3) and still be kicking this thing's sorry little butt. I really wasn't expecting to have such a great MRI this time, but I'm not saying that I mind one little bit.

Seriously though, it's hard to fight this thing off every other week (just knowing the next week's right around the corner gives me a sinking gag-like reflex sometimes). The constant ups-and-downs with replete with nausea, constipation, and anemia puts me into a general haze of not-caring about the goings-on in the rest of the world (though I do realize that this is not the most beneficial state of mind for me now or ever), I can't really let myself return to this mindset anymore. But...enough of this wining and moaning.

Anyway, my experience at Duke Cancer Center was a good one. I had quite a bit of good news these last couple of days, but now I'm tired and I need to go back to sleep, or I may catch another bug that's being passed around my parent's house...


********I got a great update for you today. I emailed my Duke PA, Sprague, trying to clear up a little bit of miscommunication that occurred yesterday. I had the opinion that there was no change from last time, but that wasn't quite it. There actually is no 'MRI evidence' of any neoplasms in my brain this means that there is no radiographic evidence of any tumors in my prefrontal cortex! Now don't freak out...yet. I still have the tumor around my cerebellum, and thankfully it is less than before. This made my treatment today just a little easier to swallow. Now I'm going to sleep for a bit. Oh and if you want, you can freak out now**************  

6 months down, just 6 to go

I've been on this chemo binge now for six months + there were two (I believe) that I had before that. I'm summing this up with a picture of me desperately trying to give my phone a thumb's up, but I think the pictures kind of lacking. You see the problem is that it was really hard to give a thumb's-up and tap the camera shutter switch. Therefore it just looks like I was caught taking a picture of myself. The thumb's-up is the focus, though, not me. Is this what my life has come down to? Making it through chemo treatments. Forgive me if I don't sound pleased.

So I've been doing well over the last six months, but my blood counts have not. Tiredness, nausea and headaches have all been kept at bay somewhat (though I did have to take about five weeks off recently due to my red blood cells being dangerously low. I was also lacking in white blood cells and platelets as well. Maybe I haven't kept all those at bay?) So my blood counts could definitely use some help. Needless to say, I was extremely tired due to my low RBC count. But now things are better. I just don't know how long my blood counts can handle this. I really don't know if I can handle this for 6 more months. I mean I think I, as a person, could, but I, as a collection of quantitative blood counts, may not be able to. Does that make sense?

Though there is a clinical trial being offered that could be my salvation. Dr. Boockvar, a Neurosurgeon through Cornell Medicine in NYC, who, listen to this, will actually take a brain cancer patient a string them up (from groin-to-cranium) with tiny catheters throughout his/her arteries to insert one as physically close to the tumor as possible. Once the catheter's inserted, he will release a sugary compound that will break up the blood brain barrier for 5-10 minutes. Then he'll release a chemo agent or an antiangiogenic agent that will actually infuse only into the tumor. These are the initial results after just one treatment. Astounding. One guy had a reduction of about 30% of his tumor mass! After just one time. Pretty great, huh? Well that was for someone that was naive to the particular drugs that they were using, but if I could only get close to the that. I would be so thankful. 
    

1/1/13: Did you know that today's the first day of the future?

Yep, I've decided that today, January 1st, 2013, is the point at which the future begins. Now, I know that there have been other such temporal indicators such as the infamous date in Back to the Future that may or may not have meant the same thing. Granted we don't have even one car that flies (or even flying scooters) but nonetheless we do all have smartphones and that's pretty futuristic, right? Who needs a flying car when you have a robotic woman on your phone british-ly informing you of everything you're interested in.

At least, it's the first day of my future. I have some resolutions that I've been thinking through the last couple of day. I need to hear your opinion first. though. First of all, I need to improve my decision making abilities. I mean I never really care what happens even when I really do care what happens; this really needs to change. At 30 years old, I really need to start being able to say yay and nay to certain elements in my life.
 
I've also decided that I really need to find a new meaning for myself at this point in time. It's all too easy to get stuck in this muck watching my life slide away. I feel like I'm stuck here in front of the TV with my life moving forward as little as possible. I need to figure out what makes my situation different from that of other people who don't 'get' to experience what I have.

I'm strangely excited about the beginning of this year. I feel like it could be the year that could hold an entirely new set of experiences for me. I'm getting so tired of the fighting/not fighting cycle I've been enshrined in. I need something new, something fresh to look forward to throughout this difficult part of my life.