yay!

so, the good news is that the tumor hasn't grown in two months, and the wound nurse at nih says the burn on mom's arm will in fact heal (maggots were offered to speed up the process, but we refused because since we can't get mom back to nih so easily, we would have to remove them ourselves, and that wasn't going to happen). and we're going to a new oncologist since ours is fine but his staff are all gigantic bitches, and the new guy's staff seems really nice. yay!

the downside to the lack of tumor growth is that even if the tumor hasn't grown, the other parts of her body which have begun to shut down will not necessarily start to work again, or even lessen the rate of decent. so i'm sort of torn because it was the best we could have hoped for, but it's still not exactly what i want to hear. i want to keep her alive and happy, but i'm not sure i can keep up this level of intensity for an undocumented length of time. there's no guarantee of any increased time line due to clots, stroke, etc., but i think we've bought ourselves a few more months. so i'm as happy as i can be, given the other options; i just wish i could be happier.

waiting, waiting, anticipating

friday is mri day. we're all on edge because there's nothing good that will come of this. there's only going to be confirmation of a plateau, which will be hard, or notice of an increase in the tumor size, which will be awful. at least the waiting will be over. but it's going to be terrible.

inhale, exhale

A has been away this past week,and I took up the "on-call" post. and now it's tuesday, and i'm exhausted. i decided i wasn't going to stay at the house; if there was a problem, i was just a phone call away. it was all fine until sunday, when i had a fantastic day with mom. so great that i was convinced that this latest treatment was definitely working and that they might throw us out of hospice. we discussed the target ad, and had a great conversation where she used full sentences, and i totally understood the other non-words she was saying, and it was phenomenal.

and then monday, her communication skills were as bad as pre-sunday, possibly worse, and i became frustrated because i was upset she wasn't really better. today, in addition to be tired and it was a grey day, my plans for putting some effort into my appearance were postponed due to circumstances beyond my controand. it was just a culmination of the disappointment in the entire last few days, and i felt like a prisoner. i'm tired of always being there, always hanging out or just simply being in the same room because no one else around, and i just couldn't handle it today. even though i ultimately got to go out, i just wasn't in the mood. luckily, everything was too big and shape-less, but i so desperately wanted to put on that magic outfit that would transform my mood, and it didn't happen.

so, that's where we are. every time there's a high point, something brings it crashing down. i just can't shake this feeling anymore. and when i spoke to my father about it, he tried to commiserate. unfortunately, i'm picking up his slack right now, so i have no sympathy and cannot agree because i'm annoyed and disappointed in him. i'm trying to get better by remembering that he really took care of mom during the first 1.5 year, and it was only after the 3rd treatment failed that he bailed out of the situation. so, i have less than no desire to do any homework, and i think i'm going to curl up in bed and watch tv and try to wait out this latest down moment.

SOOOO sterotypical

A and i went to a funeral home to make pre-arrangements. the place was so stereotypical i couldn't believe it. there were three viewings that day, and i thought that if i was being laid out there, I would want to kill myself again because it was so damn depressing. every horrible thing that one would assume would be in a funeral home was there-badly patterned carpets, horrible furniture, bad lighting, and the worst, the absolute worst, was the "rememberance room." that's where we sat and made all of the arrangements. mourners could get engraved golf balls to commemorate the void in their lives, or picture books, or celebrate on the beach with a glass of wine while scattering ashes in the wind. holy hell.

the lady who helped us was terrible-no people skills, constantly talking about her desire to learn spanish and her own wishes with regard to burial plans, and more along those lines. she couldn't answer our questions, told us we'd have to come back to the funeral home to personally identify the body (luckily incorrect information), and as we were leaving, told us that hopefully our mother would end up with the same sitution that her nephew did, where he ended up having his brain tumor go into remission. last time i checked, we were PLANNING A FUNERAL. things are not going to get better. why would someone say that after spending 2 hours hashing out burial issues? seriously. that was just plain stupid. if i hadn't just signed a contract, i would have cancelled it and walked away. at least the funeral director knew what he was doing and put us at ease, which made me feel much better. (insert morbid joke which is too tacky to actually write down.)

the funeral visit was way worse than the cemetery visit. in all honesty, i'm angry that A and i had to do it. i know that if my mom knew A and i had done that, she would have been really upset. that's not something that i would ever want my children to have to do. ever. but it's done, and another item is checked off the "forced to grow up and officially an adult" list.

i want another vacation

school starts tomorrow. it's only 2 days a week, but i'm not ready. really really really not in the mood to feel out of place on campus, in the classroom, and away from my family. D and i discussed the last time we felt as though we belonged somewhere-for him it was college, for me it wasn't really ever. i've always felt too young and in the minority because i focused more on academics than anything else, always. and i don't feel as though i was relaxed on vacation, and i want another few days just to get away. i think about stealing a weekend in nyc, or a trip to boston, or anywhere just to get away, but it's not possible. i might just be tired and stressed, and there's a lot going on right now with school, tennis, the family, friends, holidays, etc. but i just keep thinking of some sort of escape where i don't have to think about anything on more than a superficial level, to be preoccupied with a museum exhibit or what i'm going to order from a restaurant or just walking around with no destination in mind. and it seems lovely even though it's not going to happen. but a girl can dream.

so far, so good

so far, we're doing ok. A and i can't figure out if mom's stabilized, or if we can just communicated better. the only thing i need now is a decent night's sleep. the nightmares are so scary and so unbelievable that i'm never rested. i've had only 2 nights of good sleep that i can remember in the past month or so. even with tylenol simply sleep, i can't expect a dream-free night. but besides that, and not wanting to start school again, things are better than expected, which is fantastic.