Friday, February 18, 2011

baked apple day

well, today can be summed up with the following story:

today was baked apple day at primary childrens. if you don't know what a baked apple is, you are truly missing out!  it's basically a cored apple, stuffed with sugary cinnamon goodness, and wrapped with flaky, delicious pie crust and best served warm with ice cream. i don't like apple pie, but i adore these, and primary childrens is the only place i have seen them. they're to die for. i looove them.

so, with that background, i'll continue. we walked into the cafeteria and realized it was apple pie day. my heart did loops, i was so excited. that is, until i realized that the ice cream machine was broken. don't get be wrong, i am sure the sugary goodness that is baked apples would be good even without the ice cream. but nothing compares to baked apples and vanilla ice cream. after resigning myself to eating it without ice cream, i found out that another little area of the cafeteria had ice cream by the scoop for sale. happy that my life was once more whole, i practically skipped over to get the ice cream. well, i am sure that everyone else had the same idea as me, because when i got there, there was literally just bits of vanilla ice cream in the bucket. (this story is getting really long. feel free to stop at any point) thankfully, a tiny japanese woman was nice enough to work at the bucket for a good 3-5 minutes straight, managing to pull out just enough ice cream for my sister and me.

so, in the end, i got my baked apple, and to top it off, i got it with ice cream! that's about how most of my day went. really good -- bad -- good ish -- really bad -- good

i think it's a pattern :)  i started out taking a test in my world music class. i am 100% sure i aced it, and i only needed 10 minutes to take it, which meant that i could amble my way to my other class, not fight the masses and rush all over like usual. really good!

following that, i found out a had a 'guest lecturer' in my next class (read: candidate for a teaching position they're hiring. so far every candidate has had a thick accent, and only one has been engaging or entertaining.) as you can guess from that introduction, it was pretty bad.

after that, we headed up to masey's audiologist. the results were GOOD!  his hearing hasn't worsened, which means that the radiation did not damage his hearing further. but, we also found out that the chemo he will start on monday has a pretty high occurrence of hearing damage as a side effect. (i took statistics in college. i know where all those numbers really come from) thus, this warning is an ish until it proves itself a bad.

after that, we walked around for a bit and saw the train set before going to the ear-nose and throat doctor. that's where we found the really bad:

i am not a fan of doctors who think that you should revere anything they say and take it all at face value. a doctor is not a god. end of story. thus, when the doctor told us there were no treatment options and that we just needed to wait until his chemo is done to be able to know what we're dealing with, i was angry. now, i know that i am an emotional, dramatic type of person. but i also am good at math. in a perfect world, with no delays and perfect response to treatment, masey is done with chemo in december. i refuse to believe that there is nothing we can do for him in the meantime. i also refuse to believe that an ng tube is a permanent solution.

the real kicker, and what truly made this appointment really bad, was still to come. after i expressed my concerns that we have even less answers about how to help masey and cannot wait 12 months to treat, the doctor dropped this bomb: well, we're not even sure if his cancer will be cured, so... 

i could feel the rage building up in my chest. SO WHAT???  i wanted to challenge him. every centimeter of my being wanted to cuss this stupid old man out. i wanted to leap across the room and smack him. i wanted to do something, anything. my breathing became shallow and i had to physically restrain myself. i had to keep myself from full-on glaring at this pompous man, though i am sure he could see the disdain on my face. i could not believe that he really was using the obvious/terrifying (that masey might not be cured) as an excuse to not treat right now. i was truly flabbergasted. i could not force myself to talk because i did not trust myself to be civil. i listened to his feeble attempts to codify us (along with gems of phrases like well, we need to remember that considering all he's been through, it really could be worse -- NOT a solution, excuse, or acceptable answer!) i loathed this man. very seriously.

yes, maybe part of the loathing stemmed from the fact that we are literally on the eve of a possible turning point. masey's having an MRI tomorrow morning, to determine if the radiation was successful. maybe it's been kinda a stressful week for all of us. maybe i've heard some heartbreaking horror stories about medulloblastomas magically reappearing at this mri. maybe those kids did not have any symptoms when their tumors returned. maybe the treatment after the tumor comes back has not been documented successful. maybe i'm a little terrified that that child could be mason. maybe the doctor just should have known when to pull his foot out of his mouth and stop talking.

either way, i was eventually able to get him to truly explain his diagnosis/prognosis/plan of treatment. (even though it took me full on sobbing in his office and unable to talk first :)  and pene feels good about it, and so do i, so i guess that's the happy ending/really good part at the end. the end's all that matters, right??