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...
Friday, January 15
Thursday, January 14
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.
Tuesday, January 12
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.
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.
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