Sunday, July 29, 2007


i am very, very tired.
little t came over to help me with getting my mom's bills figured out, which i had been hard-core avoiding. i really needed someone else here with me doing it, so it didn't seem so hard. and, really, it wasn't that bad. she's a little overdue, and her credit cards are no joke, but nothing to freak over.
t brought kombucha and chips and a nectarine, and just hung out with me while i confronted my office work. after that, she went into my room with me while i tidied up, and we talked a lot about my mom.
i am feeling like i am moving into a new phase with my mom's death.
i felt like i really kicked the first phase's ass. i was totally present in the hospital, and even through radiation.
but i feel like i didn't do that great a job with the second phase. (i know, i hear everyone wanting to scold me to be kind to myself, patient with myself, and i am. i know i did the best i could. but that doesn't mean that i did the job i would have liked to do.) it was too confusing, too diffuse, and i spent a lot of time being sad/mad at my mom for not being who i wanted her to be, and i am ashamed of that. i am ashamed of myself for trying to manhandle her into making me happy, or trying to shove a magic sentence down her throat that would unlock her closed box of emotion for the emotional catharsis i was really wanting from her. i understand why i did it, and i understand that i couldn't have done it any other way, but i am not proud of the job i did, and i wish i had been coming from my heart more.
i feel like i am back in my heart again, finally. i am looking forward to the tenderness and sweetness of this phase, and holding mom's hand while we snuggle like seals in bed. i am looking forward to having my community around me again, and having people help me. i think i was too afraid to ask for help during phase two, and that was a mistake. i wasn't afraid to ask for help during phase three, and i am done letting my fear of this sadness keep me from really being with mom. i have been so desperate to get away from the discomfort of mom in her deteriorating state, so afraid of the sadness and pain it brings up, that i have been fleeing the house the second i could. it made me feel fucking terrible, to be avoiding being close to my mom, the most important person in my life, and my biggest influence. i felt like such a coward.
that time is done now. i remembered with pema said about fear. i am leaning into it again. i am afraid of the fear and afraid of the pain - afraid it will unmake me somehow, and it's okay that i am afraid, but i'm not going to let it make my decisions for me.
while this is a terrible time, so painful, so scary, absolutely excruciating, there is something so soft about it, too. it's like the rawness is so raw that there is nothing i can do with my brain to make it feel healed. i just have to be with the open, yawning chasm of sadness. this is my chance to take care of my mom, the way she spent her life taking care of me. my mom feels like being my mom was the most important, best thing she's ever done, and i hope that i am brave enough, soft enough, open enough to do the same for her.

lu sent this poem to me.

Wild Geese
You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting -
over and over announcing your place
in the family of things.

it's funny/serendipitous that lu sent that to me, because janie sent me a poem earlier, too.

The Guest House

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they're a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

~ Rumi ~

so, i'm back.
this is me, in my heart, with my arms open to the fear and the avoidance and the sadness and the not-enough feelings and the it's-too-late and every painful thing that is surrounding my mom's slow, steady death. this is me inviting it all in, like honored guests. this is me greeting them at the door with curiosity.

Saturday, July 28, 2007

the beginning of the end.

i sent these two emails yesterday. the first one is to my friends and the second one is to mom's friends.

hey, guys.

as some of you know, my mom's really not doing well.

she's deteriorating so quickly that it's really taken us by surprise. even last week it seemed like pursuing this new treatment, and some physical therapy, would be totally worth doing. at this point though, given how she's doing, it seems like that stuff isn't going to happen.

she's barely there, honestly. she's friendly, affectionate, agreeable, funny, but she's easily distracted, and confused, and she is totally unable to initiate or maintain any action or conversation. i just don't want to put her through the chemo and its side effects, given how slim the chance is that it'll help at all with helping her regain lost ground. it might be able to extend her life for a while, but it'd be in this state, where she's only slightly aware of what's going on around her and she's not really attached to reality.

i am having a really hard time. i have been completely broad-sided by the speed with which she's slipping away. i knew she was going to die from this, but i just didn't realize how fast it was going to happen. even a week ago i would have guessed months, but i am wondering if that's very likely now.

i'm so sad, and i'm so filled with regrets already about things i didn't do while we had the time. despite this long warning, i still find myself surprised, caught in the trap of banking on the future. i miss her so much already, and i'm already grieving the loss of the role she played in my life.

i would appreciate any help you can offer, if you're in a place (geographically or energetically) to help.. any free time where you can visit her or spend time with her to give me and jerr-bear a break; any days where you could run errands or help take care of the dog, any time you can just come over and hold my hand - really anything.

we're initiating hospice care next week. they'll help with a lot of stuff and know a lot more than i do about what i'm supposed to be doing. me and allen have both talked to her about it, but i don't think she really *gets* it. i'll be in RV monday, then bringing her to marin for a couple of nights next week (tuesday and wednesday). thursday we'll still be down here, and then i'm taking her to see rufus wainwright in santa rosa and spending the night in RV again thursday night. i'll be home friday. shannon will be gone all next week, so anyone who wants to visit with mom, or hang with me, i'd really, really appreciate it. jerr-bear is concerned that the burden of taking care of her by myself might be too much, so if anyone is available to help out at some point next week, let me know.

i'm home a lot these days, so trying me at home is the best first spot to try. (415.***.****) next would be my cell (415.***.****). monday, trying me on my RV cell phone might be a good idea (707.***.****.) you can always email me and i'll get back to you when i can.

i love you all and i'm sorry to be the bearer of bad news. i am also sorry i wasn't able to call you and tell you in person. honestly, i'm a little burnt out on talking about it, and i just can't handle telling everyone in person. i can't get the fluids into my body fast enough to compensate for the crying that'll cause. (i'm having enough trouble as it is.) if i could have called you to tell you, i really would have. i know email is a much less intimate method of communication, and not ideal for this kind of thing, but i gotta do what i can do, and i didn't want to wait any longer to let you know.



hi, everyone.

i am writing to let you all know the situation with mom.

within the last month, mom has been deteriorating really quickly, as far as her mental abilities go. she's been fuzzy for a while, but we had all chalked that up to post-surgery, post-radiation damage that would heal over time. about 3 weeks ago, the doctor decided to take her off the chemo meds she'd been taken, since they didn't appear to be helping, and we began pursuing alternate treatment. in the 3 weeks since she stopped that medication, she's been getting worse and worse, very fast.

at this point, we're questioning whether pursuing alternate treatment is really worth the cost to her, physically. she is disoriented and unable to initiate action or conversation. she is pleasant, affectionate, amenable to cajoling, but just isn't able to manage things by herself. given this situation, we feel like adding vomiting and diarrhea to the mix would be unnecessarily difficult for her. because the likelihood of this medication allowing her to regain lost ground is so slim, any added lifetime that she gets from the medication would be in this state, where she can't take care of herself, can't follow conversation, can't remember what she's doing or where she's going. that doesn't seem like a life my mom would be interested in having more of.

we're initiating hospice care for her in redwood valley. we don't honestly know how long she has, so i can't give you any kind of estimate, but i think it's safe to assume that this is the very beginning of the end of her life.

i'll be bringing her down to marin off and on in the next few weeks. jerr-bear is bearing the brunt of her considerable care needs, so i am going to be taking her some to give him and break, give her a change of scenery, and give people down here a chance to see her.

she isn't reading emails or returning phone calls at this point. you're always welcome to send cards, or to try calling, but she's not really able to stay on the phone for extended periods. quick calls to tell her you love her are the best. i know that this is hard for all of us, but i'd really appreciate it if we could keep the tearful discussions of her impending death to a minimum. she is somewhat aware of the situation, but it's not clear how much, and she's not in much of a state to talk deeply about her feelings on death or her condition. she's just not there and i worry that it'll only upset her more that have numerous people telling her how sorry they are when she's only just barely understanding the situation. please keep calls and cards warm and easy. we are discussing her situation with her as we go along, but she isn't the person any of us are used to anymore, and she can't be expected to behave that way.

please call or email me if you have any questions, or to set up a time to see her. anyone who'd like to come up to visit is encouraged to. again, just let me know and we'll schedule the visit.
my contact numbers, in order of likelihood of reaching me, are:
home - 415.***.****
marin cell - 415.***.****
mom's house - 707.***.****
my mendocino cell - 707.***.****.

as i'm sure you can imagine, this is an unbelievably difficult time, so any help you can offer is greatly appreciated. also, please know that if i don't get back to you immediately, it's not because i am avoiding you, or because your communication isn't important to me or mom. the day to day tasks required in taking care of her, combined with the paperwork/business details of medical care, insurance, getting bills paid, etc. is really time consuming, and i can only do so much in the day.

as always, your love and appreciation for my mom means a great deal to me and her.


all in all, a pretty crap day.
talking about mom's situation and how i'm feeling, over and over again, with concerned friends and family, is fucking exhausting.
i meant to take the whole day off, but wasn't really able to.
i talked to the nurses at UCSF a bunch, and asked them some tough questions - how long? (they have no idea.) what will it be like? (really peaceful, actually. just sleeping more and more until she doesn't wake up.) is this the right decision? (only we can decide - of course. fucking free will...)
i had therapy in the morning (thank god), so i'd gotten a nice base tan of weepiness laid down. i talked to mom and jerr-bear a few times. yesterday was a pretty good day for them. the 'roids seems to be helping some, if only just to perk her up a little bit. she was a little easier to talk to on the phone. she still told me a story that i am 99% sure didn't happen, but the nurses said that was a natural stage in this, too. the brain just starts kinda spinning freely after a while, i guess. we're gonna try upping the 'roids to see if that helps. the effects when she was first taking the 'roids were SO dramatic, that i was expecting something like that this time, and i might have been a little premature in assuming they weren't helping at all.
still, they help with the swelling, but they don't help with the tumor itself. they might make it easier for us, so she's more aware and easier to communicate with, but they're not a solution.
we'll just see what happens, i guess.
i stayed up late finishing harry potter.
i am really, really sad it's over.
it's been nice having something so meaty to veg out on during all of this.

Thursday, July 26, 2007

me and mom.

right before mom went under, beneath her cancer, she had just bought rufus wainwright's new cd. she was crazy for it, listening to it constantly. she played it for me in the car, the last time i let her drive.
rufus wainwright is playing in santa rosa next thursday, so i bought the two of us tickets.
i keep living through this like it's a movie about cancer, and in the movie, this is the scene where we have a beautiful experience together, right before she gets really, really ill and dies. the last scene is me being brave and finding hope after she's gone. someone in that scene will tell me that mom wouldn't have wanted me to be sad about her passing.
that scene is coming, but not yet.

i don't even know what to call this.

so, earlier today, before i headed up to see mom and jerr-bear, i had told you that i asked the universe to give me an easy visit.

not only did the universe, or god, or whoever, NOT give me an easy visit, i was given the worst, most terrible, upsetting, heart-shredding visit i could possibly have dreamed up.
so far, the steroids haven't done a goddamned thing.

mom is barely eating. she falls asleep constantly. she is totally unable to focus on anything. she can't remember what she's in the middle of doing. (jerr-bear wanted to change the cartridge for the fax/printer, so mom started listlessly looking through a stack of papers. either she doesn't remember what a fax cartridge looks like or she forgot what she was looking for and just wanted to help.) she's having some problems with her vision now.

she's not really attached to reality at this point. she told me this weird story as i was leaving, about how she'd have to tell the little black hen to unpack her bags, because she'd wanted to come with me. i was confused, and asked if she meant their little black hen, violet, who really likes people. mom wasn't talked about her, though. she mentioned some other chicken names that i'd never heard of, and referred to something we had done last night. i started crying and told her that i hadn't been there last night. she was so genuinely surprised, like i was teasing her. i said, no, i'd only arrived a few hours before. she said no, and told me that last night she and i had gone for a drive in the hills, looking for the email dispatch center. i told her i was sorry, but i hadn't spent the night last night, and that never happened. i suggested that maybe it was a dream. she looked so befuddled and half shrugged. she kept asking me if i needed a ride anywhere, because i guess she forgot i have a car and my license.

the reason for my trip up there was to gather her bills, so we can get her set up with a bill paying service, but because she's so disoriented, and her memory is non-existent, she didn't really have any idea where anything was, and she forgot what we were looking for mid-search, every time. she kept handing me random pieces of paper, in hopes that they were what i needed. i maintained my breezy, 'it's not a big deal that my mom is gone' attitude and cheerily thanked for, but said that wasn't quite it. inside, i feel like the dream of my mom living through her cancer and becoming herself again, somehow, died today. i spent a half hour crying on the floor, hands over my face, my mom's gaze fuzzed in the middle distance. we talked about calling a hospice, just in case, and it made mom sad that we had to talk about her death like it was imminent. it's fucking exhausting trying to pretend i don't think she'll probably die soon.

i spoke to an old friend of my mom's, who mom reconnected with when her and jerr-bear moved up to mendocino. this friend is a hospice nurse herself, and we talked frankly about my mom's death. she is very nice and very supportive, and she said a lot of really helpful things, but i also found her saying this semi-meaningless positive affirmations, that paint a broad inspirational portrait without actually touching on reality. yeah, i do need to find a way to grow from this, and take it one day at a time. but that doesn't help me right now, with this minute, which feels like my chest is going to implode from sadness and missing my mom.

it's so fucking cruel to take my mom away from me before she's even dead. brain tumors are fucking monsters. what the fuck kind of loving god makes people endure this kind of incurable anguish?

i joined a message board for the spouses of brain tumor patients. it's been making me feel less alone. i actually haven't posted anything on it yet, but just reading other people's stories, which are like a hundred different versions of the story i'm living, makes me feel less alone. i guess sexual deviants aren't the only ones to benefit from the wide scope of the internet. me and the furries, reaping the bountiful benefits of modernity.

i've got therapy tomorrow.
too bad i won't have anything to talk about, huh?


i'm heading up to my mom's house today.
i'm spending the day up there, but i'll be heading back tonight.
i have to gather a bunch of paperwork while i'm there.
bills, receipts, deed to the house...
i'm nervous about going up, because the last time was so hard, and because i'm not in the most robust mental state.
i fell asleep last night asking the universe to make my visit today as easy as possible.
even though me and the universe are still a little bit on the outs, i hope it'll do me a favor, for old time's sake. perhaps as a small gesture of remorse for the bullshit it's dished out this year?
anyway, babysitting was a little forced vacation (if working on a chaingang could be seen as a vacation from...say...working in a coal mine), but now i'm back to the good old coal mine!

Tuesday, July 24, 2007

the morning after.

i talked to mom this morning.
she was MUCH more alert.
she doesn't remember anything about yesterday, which is not cool, but at least she's up and about today.
she was up, out of bed, taking a shower when i called again a little bit ago.
i spoke to her nurse at ucsf.
they're going to put her on more steroids, to help with swelling.
this nurse is the first person to cut the crap and tell me honestly that this might just be my mom dying, basically.
she said, very gently, that the survival rate is usually around 12 to 16 months after diagnosis.
i really appreciated her honesty. i don't need false hopes, i need to have an idea of what to expect.
i think the 'roids will help a lot. they certainly did last time.
i'm looking into support groups for all of us (me, mom, jerr-bear), occupational therapy for mom, maybe even neuropsychology, if she's up for it.
now, i am off to pick up HARRY POTTER!!!!!!!!!!, grab some food for the day, and head over to sit on little mykkie for the rest of the day. they are a lot of work. had you heard? because they really, really are.
i am happy to spend time with mykkie, AND this couldn't possibly be a worse time for me to have to be taking care of someone else. i really need to be focusing on my mom right now.
um, did i mention i am going to start reading HARRY POTTER!!!!!!!?
because i am...

Monday, July 23, 2007

very bad.

i got a voicemail from mom's b/f, jerr-bear.
he doesn't ever call for good reasons.
heart audibly pounding in my chest, i called them back.
mom answered with a chipper, "good morning!"
i had to tell her it wasn't morning, it was 9:30pm.
she was affably befuddled.
i asked to talk to jerr-bear.
he told me that the situation is becoming too much for him to handle. mom didn't get out of bed all day, thinks it's morning, hasn't eaten.
also, he is running out of money and needs more.
(mom owes him $20k for work he did fixing up the house they sold and for fixing up the new house. she's been giving it to him in chunks.)
he feels like all he needs is $5K for the rest of the year, which is amazing to me. very few people in america could estimate their cost of living for 6 months at $5K.
it's his money, so obviously i'll get it to him.
he is really upset about not getting more furniture refinishing jobs this year. he made a lot of money (for him) last year doing his work working, but this year he hasn't gotten more than a couple teeny nibbles on the line. because he's him, he drifts into wondering if "someone" is rerouting his calls to a competitor, to "mess" with him. i think he realizes that that's not likely, but not always.
i was momentarily tempted to suggest he get a real job, in the real world, but the temptation passed. he is basically mom's primary caretaker at this point, and the last thing we need is him gone for hours and hours and hours at a time.
i hate that so much of this is falling on him. he must miss her so much. no one really understands him, and everyone thinks he's varying degrees of delusional, exasperating, rude, annoying, weird...but mom thinks he's precious, hilarious, gentle, kind. she sees the real him. i wonder if he even knows those parts exist without her. i can't imagine having no one to talk to about this. i miss mom with every breath i take, and wish i could call her to tell her how hard this is and have her tell me that it's okay, and i have a blessedly huge circle of support around me. i just can't imagine how alone he must feel.
so, now i have to figure out what to do.
does she need some sort of nurse, or a nursing home? the american brain tumor association (whose website i've never explored and am now wishing i had) suggests adult day care centers, which sounds so fucking demeaning. my mom might die of embarrassment if she ever comes out of this.
i have waited too long to get this stuff dealt with, and i am feeling ashamed.
you guys, i'm so mad at her.
i yelled at her on the phone and she's fucking brain damaged.
i have no idea what i'm doing and i'm terrified.
i don't feel like i can handle this.
and i have to.
i have no fucking choice.
so tomorrow i call the nurses at ucsf, who support mom's neuro-oncologist, and ask they what the fuck i'm supposed to do.
is she even inside there anymore?
i had given her and allen assignments when i left on friday.
mom was supposed to do two things to contribute to the house. any little thing was fine, but it had to be two things. allen has been waiting on her hand and foot and he's burnt and needs some help. she felt like that was do-able.
allen's assignment was to get her outside once a day, to move around.
he said tonight that the assignments are a joke and she won't do it. she wouldn't get out of bed all day.
so, tonight i modified her assignment.
her new assignment is to get out of bed everyday by 10am (i would have liked to do 8am, but i am a lenient and loving daughter who understands baby-steps.) and to put on normal clothes. no more laying around in bed all day in her pajamas.
she doesn't need to go anywhere or do anything, but she needs to get out of bed and get dressed.
who the fuck am i kidding?
i have no idea if that's even going to help.
for all i know, this is textbook behavior and i am being a fucking asshole by making her do stuff she doesn't want to do.
but i feel like that's the thing, is her not wanting to.
where's the cut off line that separates self-indulgence from self-care?
mom had a pre-cancer tendency to be pretty damn self-indulgent, so it's hard to get that this is all her brain being messed up. i think part of it is depression over her cancer, which she hasn't ever addressed, and she's self-medicating through sleep.
or maybe she's exhausted because of her chemo and radiation...
she never had any serious side effects from either, so i am just at a loss. is this just very late side effects?
i'm so far out of my depth on this.
other issues that are still rattling around:
1) our lawyer informed me that mom's will was never finished, which was news to me. that's horrifying.
2) what if mom is a vegetable-type from now on? how will we deal with her house? it's a wretched time to try selling.
3) is it possible that we'll end up spending all of mom's money on care for her after all?
4) will allen stay?
5) how much of this can i handle, really? could i handle 3 nights a week up there or would that gut me? but it might need to happen, maybe.

this week.

i didn't go to la.
did i mention that already? i might have.
pinetree said she had planned for us to go get drinks in the afternoon on tuesday at chateau marmont, and i momentarily regretted my decision. i always wanted to go there, but was too intimidated.
i worked on mom stuff for 6 hours or so today - phone calls, mostly.
i made some doctors' appointments for her, and one for me, too.
i cleaned my office enough to function in.
i did laundry.
i set up my MOM binder, and ordered some supplies to finish kitting it out.
i joined twitter. i'm not sold on it, but i'll try it out. email me if you want to stalk me, obsessively following my daily/minute-by-minute movements.
not an especially happy day, but productive.
i called mom at 2:30pm, to ask her some questions, and she was still in bed. i told her that that didn't make me feel happy, hearing that.
okay, now to dinner, with the manfriend. we have been eating REALLY late all week, so we're trying to get back on track with normal eating hours.

Sunday, July 22, 2007


i felt really, really blue last night.

i think it was the combination of stuff sucking ass with mom and that being an overwhelming energy drain, and then watching little mykkie for 10 hours, which was also an overwhelming energy drain.

man, you know what takes it out of a person?
watching a tiny person who is 1.25 years old.
he was very, very well-behaved for us.

he was super fussy as a small baby, and even recently, he's been slow to warm with strangers, but he's a little butterbean with me and the man.

he took a little nap on our bed (after some masterful coaxing and soothing and trickery from me), shared lunch with us (chicken satay, cucumber salad, cheerios), and generally cruised around touching everything and trying to fall on his head. he doesn't know anything about watching where he's stepping, being careful about hitting himself in the face or head with things, gentle vs. rough, loud vs. quiet. what he knows about is being so cute that it hurts one's tummy and being a cuddlebug.

between the emotional hurdles of helping my mom and the energetic hurdles of watching that baby, i was tired to the point of near meltdown. when i panfully pinched my finger with the bottle opener, trying to open my cider, i started crying.

i just thought, 'really, god? really? i deserve *this,* on top of everything else? what the fuck?' and then i cried because sometimes i feel like god is mean, or confident in my coping abilities to the point of being an over-delegator. i can't be expected to manage EVERYTHING, god/universe. please remember i'd also like to enjoy my life, not just win the sympathy and admiration of friends and strangers alike for my plucky sticktoitiveness.

i went to bed pretty early, convinced that basically everything was screwed.

i woke up this morning feeling an eens-weens bit better, but still a bit down.

i moped around the county until i finally got off my keister and went to the gym. i have spent my entire life not wanting to exercise, and only within 2007 - year when everything fell apart - have i really understood why people like exercising so much. i think it takes a while to get over the hump with working out, feeling uncomfortable, fat, out of shape, etc, and into the zone where just being there makes you feel proud of yourself and better for some reason. i always feel thinner the day after i gym, and more healthy and optimistic. i get it now; i get why people would want to go to the gym after a long day at work. and i'm relieved i finally get it, because i was pretty worried about being overweight later on and bitching about it all the time. i'm learning good, healthy habits now, that will help me in the future and help my kids be healthier and happier, too. i just always felt so left out by the physical activity thing, but now i'm in with the in crowd.

the man and i drove to the 'luma to check out future home at night, and see how loud the nabe is after dark. there is some freeway noise, since we're on a hill, but it was totally within the range of noise levels that are acceptable to me. i think man-head agrees.

on a different note, should i make up code names for everyone, so that when i become famous for my blogging (insightful, inspirational, hilarious - something for everyone, really), my adoring fans aren't mobbing me and my nearest and dearest? am i being silly to even think that? i am just thinking about stalkers or weirdos. maybe i should be more careful about the personal details and stuff.

what do you think? is using nicknames pretentious and self-important, or is it wise, to protect me and my peops from prying?

Friday, July 20, 2007

harry freaking potter!!!

holy quidditch, you guys!!
it's gonna be here in, like, 1.5 hrs!
i am freaking out.
oh, also, can we talk about how much this sucks?
i pre-ordered, 'cuz duh, like i always do, but this time they had a delux edition available, with a special cover and special art, for roughly $1,000,000, so i totally bought that one because it's the LAST book in the series.
and then i got a call from my local independent book seller that my DELUX, $1,000,000 version wasn't coming until....wait for it....wait for it....TUESDAY.
totally bammer.
i am basically going to be a one woman media black-out zone until next friday or something.
it's like i am a fan of a popular show, whose season finale i missed, and i have to avoid anyone ruining the surprises for me.
except instead of some dumb show that sucks, it's an entire book series that was awesome.
still, i'm brimming with excitement, trepidation, anticipation, etc.
don't tell me what happens.
it's going to be amazing, though, probably.

also, this weekend at my mom's was fucking difficult, but i am not in the mood to go into it. suffice it to say, it was tuff, and i was sad and mad and tired and embarassed and frustrated, all at the same time.
and, eventually, i left feeling marginally more positive than i thought i would.
i have to keep the hope alive, perhaps in spite of medical evidence to the contrary, that the mom i love and miss might be hiding beneath this old lady-smelling, pajamas-all-the-time- wearing, forgetting what she's saying mid-sentence, visitor from another planet/century whose home i am staying at as my part-time job.
i connected with jerr-bear in a really great, positive way today, and that felt good.
all the errands i tried to run with her ended in annoyance, none ended in success except getting my poor filthy car washed. (seriously, if my car was a person, she'd have been a normal classy lady, dressed in a business suit made of bird poop, pee, mud (lotsa greasy sunscreen fingerprints on my little lady.)
she's clean as a whistle now, though. ukiah pricing is brilliantly affordable. $17 for the carwash i usually pay $30 for in san rafael. i guess it pays to get my carwashing done in the poorest county in california.
tomorrow, we babysit the little tater tot, starting at 8:15am. anyone want to hang out with maybe the cutest baby ever borned?

Thursday, July 19, 2007

not easy.

i'm spending the night at my mom's tonight.

i've been meaning to come up here for the months-ish, and have been avoiding it.

it's just so much harder to spend time with her now, with her new brain. i don't really enjoy our time together, and i spend the whole time correcting her, enlightening her, scolding her, motivating her, etc. her brain makes weird leaps now, where strange things seem real to her. that's especially upsetting, given how borderline delusional her boyfriend is at times. we've always relied on her to be the normal one, and now she's thinking weird things, too.

i guess she spends long periods of time just sitting. not really looking at anything, or doing anything aside from...sitting. just sitting. i told her i find that scary - what the fuck is she doing when she sits there? she said it freaks allen out, too. no doubt it does. i asked her what she's thinking about, and she said her mind just wanders. she says it's pretty pleasant, actually. i also didn't enjoy hearing that. hey, mom, how about you spend less time enjoying your slack-jawed staring, and a bit more time actually living in the world?

on a related side note, people feel the need to play devil's advocate with me about my mom. obviously i'm having hard time with this, and feeling some frustration with my mom, and it seems to make people really uncomfortable for me to complain about her. i thought i'd address this right now, in case anyone feels compelled to do this:

my mom has always been one of my closest confidantes, to the point of concerning my dad at times. we've always been very, very good friends, as well as mother and daughter. i've always been able to talk about anything with her, and i've relied on her to fill a specific niche in my life.

now, my mom's a completely different person. she's still really funny, and thinks things are funny. she still enjoys things that light up, flash, glow in the dark, or are prismatic and shiny. she's her, but not her. she's confused, unmotivated, disorganized, uncommunicative and generally loafy. yes, i realize having cancer is probably very difficult and scary for her. agreed. you know who else her cancer is difficult and scary for? me.

and i'm really bearing the brunt of the cancer-related details, about treatment, finances, the future, and everything else. she just isn't handling that stuff.

she's my mother, and she has been an exceptional mother, and i love her and it's my privilege and duty to fill this role for her - AND it's not easy, and i think it's natural that some times are harder than others.

i have found that our roles have completely switched, and much sooner than i'd expected. i remember her talking about going to her dad's house before they put him in the nursing home, and her telling these horror stories about the years' worth of old national geographic, piled in waist high stack along the walls. my mom's house is getting close to this. so, i am left feeling, again, like she's my grandmother, and not my mom, because i don't think about my mom as being this addled pack rat, wearing pajamas all day long. nnow, i'm the frustrated mother and she's the kid, just finding her way. or, i'm the exasperated middle-aged child to her deteriorating elderly parent. again, i assumed this would happen at some point, but i imagined more time with her being Her.

i miss having the mom i knew. i miss her caring about what was going on with me without being reminded to. i miss her sharing wisdom during times of trouble. i miss her kicking my ass, and i miss having her to lean on. i just miss the mom that i was close to. i have really been clutching to the doctors having told us that this would pass, and i am tired of waiting, and i want her back - at least some.

so, i think it's pretty normal for me to be mad. it's normal for me to be sad, and to be grieving the loss of my old relationship with her. i don't think it's unhealthy for me to gripe a little bit about my circumstances. i don't need to be reminded that it's hard for her, or offered perspective about reasons why she is the way she is now. i already know. usually, i just want to vent. sometimes i need to vent the anger, so i can get down to the sadness underneath.

back to being up here.

i spent the first 30 mins up here wandering around the property with her. then we had a conversation about her treatment, in which it became clear that, despite our numerous conversations about her treatment options, and the long talk we had yesterday about it, she was confused about which treatment options we were pursuing. that's fucking scary. i had to explain ALL the options over again, and explain why we had chosen the one we did, TOGETHER, yesterday. luckily she trusts me and my memory, or we'd be in for some problems.

then i had a conversation with her about getting off her ass to do physical therapy. she has gained a lot of weight since all this started (roughly last november) and she has nothing but mean things to say about herself, but she's not doing anything about it. she's not as stable on her feet as she was pre-surgery, so we thought it would be good to get her in with someone who could help with building her strength slowly, focusing on her wimpy left side. then she could get back to a point where she could go for walks by herself, or go to gentle yoga classes and stuff. we had a conversation about that a few month ago and nothing has happened with it, so i am making it happen.

we also talked about doing some occupational therapy, to help with her cognitive smooshiness. i am not comfortable with the hours spent staring at her hands, thinking. i am not comfortable with the fog she lives in. i know it's from the major trauma her brain experienced in a short period of time (2 brain surgeries in 20 days + radiation = whoa), and it's totally understandable, and i think we could probably doing more to encourage her brain to start fixing itself. she's interested, so i am working on that, too.

then i gave her another 'what the fuck are you doing with you life? how about you get out of your pajamas and live? it's not time for you to be acting like a 90 year old yet, so let's not get ahead of ourselves.' talk. she smells like an old person now. she moves and talks and thinks like an old person, and it's totally unnecessary. again, i told her that if she wants to go gently into that good night then i'll accept that, but not unless she chooses it. otherwise, i'm going to drag her out and make her get off her duff.

i'll be up here a few nights a week from now on, so i'll be in a good position to harass her into doing things she would otherwise let slide.

i cleared off the catalogs and charity requests for donations on the kitchen table, filling one paper shopping bag. i left a weensy little stack of stuff for her to check out (which, if left to her devices, she will never check out).

then i hit her office. it's not as bad as i thought it would be, which is a very pleasant surprise. i spent another chunk of time digging through those piles. again, filled a paper shopping bag with requests for donations and catalogs and other bullshit. now the piles are manageable sizes.

i am going to pay off her credit cards this week. we'll take one of them out of commission and save it for emergencies, and then we'll call and get the credit limit lowered for the remaining one. there is no earthly reason for her to have a $7000 credit limit on her cards. she's on a fixed income, for crying out loud. she shouldn't be catalog shopping, or buying random shit online. then, we'll get her set up with a bill paying service, so she doesn't let things get out of control. i found a few overdue bills hiding in the piles, but she says she's up to date now. i would feel much better if she wasn't doing it herself anymore.

so, it's with a sense of relief that my mom and allen have welcomed The Warden back into their home. no pile will go unexamined, no bill unpaid, no counter uncleaned.

i am exhausted, sad, scared...pretty much all the unpleasant emotions are there. but also, i am glad i am able to do this. i am very thankful she's not resistant to my meddling.

next time, i'm bringing my recorder up, and i'm going to start interviewing her about her life and recording it. i firmly believe that everyone has an interesting life story, but i'd be willing to bet that most people will agree that my mom has lived a remarkably interesting life. i would love to have a record of her thoughts about her life, and, if she doesn't live to play a big role in the life/lives of my kid/s, i'd like to have some way for them to get to know her.

in fun, superficial news, i bought a sweet-ass hat.
with my gorgeous new hair color (thanks lauren!) all the magazines say i am supposed to wear a hat if i am in the sun for very long, so my hair doesn't turn "brassy."

i almost bought some stuff i don't really need right now at sephora, but i came to my senses.

the pest inspection on the house was today, and shannon brought my dad with him to it. shannon is kinda 'whatevs' about having brought my dad, but i thought it was awesome and i was really moved that they had done it together, without me. shannon said my dad really liked the house, and agreed that it was the perfect starter house, with nothing major in need of repair and a simple construction so shannon can so most things himself. the pest inspection was like the home inspection - plenty of things that can be done, but no fires that need to be put out.

we'll have an interesting time trying to cram all our worldly possessions into a smaller sized place. here are some pictures of it. also, some pictures of my new blonder hair! it sorta looks like i have the same haircut as victoria beckham in one of them, but it's really back in a ponytail. don't worry.

Wednesday, July 18, 2007

baby 101.

i watched mykhail all by myself today, from 2pm to 8ish, his bedtime.

here are some things that went well:
1) he only cried once, and it was very briefly.
2) he ate for me, which he never does for his mother.
3) we cuddled like otters.
4) i changed his diaper twice, and it stayed on, and it caught the bodily stuff coming out, with no leakage.
5) i did not drop him or hurt him accidentally.
6) he did not choke or come to any harm.
7) he went straight to sleep with no fuss. again, this isn't common.
8) he is very smart, and he clapped at the part in the book where he was supposed to, and he waved at the right part, too. oh, and he points to ducks and says, 'du!' CUTE. he also points to the stove and says, 'hot!'

we are friends, me and this little person. he likes me, and trusts me, and will walk up to me and bury his face in my leg, or will lean in to rest against me.

it is really gratifying to have a baby really like me, when i like him very much, too.

this is promising, so that 2008 - year of the golden baby - doesn't culminate with me having to give my baby to someone s/he likes more.

i talked for a while with stef, when she got home from work. she's having a hard time, like everyone else during this crotch-kick of a year. i think i'll probably be spending a lot of time with mykhail, to help her out.

oh, also, did i mention we made an offer on a house and it got accepted so we're buying a house? yeah. whoa. it's true. we're terrified, and it's a singularly terrible time for it (mom dying of cancer, pondering a baby, stef needs help of a financial or energetic variety, we should be saving for costa rica, i have no job, etc.) but we're just going for it. possibly unwisely, but we're going for it nonetheless. it's a very exciting (SCARY) turn of events.

i'll post pictures of both mykhail (he's so cute you'll LITERALLY pee in your pants from it) and our house(!!!) when it's not 2am.

Tuesday, July 17, 2007


my family has used this financial lady for years.

when i was younger, and my mom and dad were still together, they used her for financial counseling and bill-paying.

when they split up, my dad hired her and her people to handle all of his business and personal expenses.

when mom inherited the house from my grandfather, and had some money to play with, she called this lady for advice.

so, now that my mom's mental stuff is getting a little iffy, and her organization in her head is the pits, i am hiring this financial lady and her service to handle my mom's bills.

before we found out about the fucking cancer, one of the signs that something was amiss was the piles of unpaid bills that mom's boyfriend found around the house. they thought mom was depressed. so, while my mom was going through brain surgery, shannon paid all of her bills. i paid her bills for a while, but she seemed like she was doing well, mentally, so i let her handle them once she got back home.

but it seems like, given the fact that she can't remember where she puts things, or when things are supposed to happen, maybe expecting her to pay her bills on time is too much. i don't want to find out that things are out of control, because mom was too embarrassed to ask for help. so, i suggested it and mom was receptive.

i know it's scary for mom to have to give up so much control of her life. me and allen are trying to wrestle the car keys from her hand. i am taking the bills away. that's a big loss of autonomy. obviously i don't know what that's like but i can imagine. but she's been pretty much fine with it. i think i was successful in convincing her to think of it like an indulgence, like having a housekeeper.

i knew that this stuff would have to happen at some point, but i expected it to happen when she was a senior citizen. this is yet another wrinkle of crappiness in the whole big elephant of crappy.

in more cheerful news, shannon and i made an offer on another house in petaluma and it was accepted. we are terrified, but also, i think we're excited, too. i think. the offer we made asked them to pay the closing costs, and to leave the island in the middle of the kitchen, and they were okay with both. also, they asked for two extra weeks to move out, and they'll pay us rent to stay for those weeks. so, basically, these people are paying us to buy their house.

there are a lot of reasons to be scared about this. what if the market continues to go downhill and we bought a house for a lot more than we needed to? that's a possibility. what if our little house never increases in value? that's a possibility, too. what if it's way too small and we end up hating it? unlikely. it's pretty cute. what if we can't sell it? who knows, right? we'll just have to see.

moving away from marin will be sad. um, you guys? if i have a baby, i'll probably need a lot of support and help, but i'm moving a little further away. could you please come up and help me sometimes? i promise that i won't be the kind of new mom who never leaves the house, so sometimes i can meet you half way.

Monday, July 16, 2007

i've been afraid of changing 'cause i've built my life around you.

i have been blogging on myspace since 2003, i think, which blows my mind. doesn't 2003 seem really far away?

i have some people who subscribe to my blog on there, and i like having people read about how i'm doing. i like writing, and i have come to rely on my blog to help me get things out of my head. i have never been a successful journal keeper, and as i got older and more computer-reliant, typing seemed so much faster than writing. i stopped being able to write as fast as i think. so, i have become a regular blogger.

(as an aside, i find the entire blogging thing pretty embarrassing. i am uncomfortable even saying that i have a blog, which seems so self-promoting and narcissistic, like 'oh, my personal thoughts are SO interesting that everyone should know about them, and check in regularly!' plus, it feels like one of those trends where, if you missed the beginning, starting now is pretty stupid. like burning man. it's already too late.)

some people have suggested i look in to moving my blog to an actual blog site, making it more official. that's scary for a few reasons. 1) what if the 10 people who read my blog stop reading it because it moves? and 2) then i have to admit that i am going out of my way to blog, and it's a real Thing now, something that i do, on purpose, that i can't shrug off in a casual way.

rule #1 of being a cool kid is to try as hard as you can, but to never, under any circumstances, make it obvious that you're trying. and i am violating that rule by trying. if i had been cool enough to start off on another page, then i'd be set, but i didn't. so, again, i sink lower in the ranks of cool kids.

(to new readers, all 2 of you, you might not be familiar with my intense concentration on coolness. i recommend you check old entries from my myspace blog to catch up. it's a recurring theme, though, so i think you'll pick up the gist as we go along.)

so, here i am, tossing cool nonchalance to the wind, and blogging freely on a blog site. i set up a new page, picked colors and fonts.

i am not sure how i will work this, if i'll post to both for a while, or link from her to myspace, for people who are slow to follow over here. i think this will be a good change, ultimately. i would very much like to be writing more, but blogging is about all i can manage right now, between the oppressive futility of my existence and the stifling quality of my self-censoring, so i might as well encourage myself in this.

(i'm just kidding. the sense of futility in my life is only intermittently oppressive.)

here goes. hope you'll let me know what you think. if the font is illegible, or the colors are ugly, or it's getting stale reading about my existential angst and i should add in more shoes.

thanks for your support.

Sunday, July 15, 2007

it's back.

friday was a really crappy day.

well, like all days, it had both good and bad characteristics, but it wouldn't be overly dramatic for me to just say it fucking sucked.

clinically, the doctor's appointment could have totally been worse. there's more regrowth than dr. butowski was expecting, which was certainly an unpleasant surprise. it showed up in a newer area, an area that didn't show signs of growth last month. he feels like it's growing along her vascular pathways. when it comes to all cancer, more is bad, and given how mysterious the brain is, it is especially concerning to me whenever there's more growth. i keep wondering, which part of her will it take out?

he gave us a few options for treatment. the point of this appointment was to see if mom's chemo meds were working for her, and the new tumors give us a resounding 'no.' so, now we need new drugs. here are the options, in order of desirablity:
1) a drug combination that is very popular because it's so effective. regular chemo in this kind of cancer is about 30% effective, which is a shitty figure. this other combination is 60-70% effective. we like those numbers more. this particular combination targets the blood flow to the tumor, which slows or stops its growth. that's especially good since he feels like it's following those pathways anyway. oh, but here are the downsides:
a) the important drug in the cocktail is approved for use in colon cancer, no brain tumors. they use it all the time for other types of cancer (that's really common with all types of cancer - the trading around of drugs) but it presents a problem when it comes to insurance.
b) it costs $20,000 an infusion. and she gets infusions every other week. yowza. because it is such a literally unbelievably expensive drug, insurance companies would rather not cover it.
c) doctors often don't like to treat patients with it, because insurance companies don't want to cover it. they don't get reimbursed the way they want to for it, so they just don't do it. so findin a doctor in mom's area, who is willing to do this thing, is not necessarily impossible, and maybe totally easy, but also maybe impossible.
d) since mom has medi-cal, and since medi-cal is kinda bootsy as far as insurance goes, they will really not want to cover this. between it being CRAZY expensive and it not being technically approved for use for her cancer (so they can say it's too experimental to cover), they have ample reason and opportunity to nix this option.
e) oh, and because it works on the blood flow, choking it off from the tumor, it naturally chokes blood off to other areas, too, resulting in a really serious risk for high blood pressure, kidney damage (because kidneys are all blood) and....wait for it....spontaneous bleeding into the tumor. again, yowza. because of these side effects, she'd need weekly blood pressure and blood tests, and most people have to get off this cocktail within a few months.
there is a chemo doctor in mom's area who might be willing to do it, though. if we have a doctor who's willing to treat her with that combo, we'd be in business. he might not want to, but i'll call him and ask tomorrow. it would be really amazing if mom could get her treatment up near her house, so she wasn't have to come down here all the time.

2) because the chances of 1 working out are so slim, 2 is the most likely candidate. it's a drug trial, trying out a different, newer, better(?) version of the previous blood-flow-stopping drug. same side effects, which are scary. the trial is only open to people dealing with their first recurrence (like mom.) problems:
a) because it's a trial, she'd have to get her infusions at ucsf, every other week.
b) those side effects are no joke.
c) because it's a trial, we really have no idea if it'll work. that's quite a roll of the dice, but who cares, right?

3) there's another drug trial, which does something totally different. again, might not work. it's a pill, which is rad. side effects are more chemo-typical - fatigue, nausea - but with the added treat of full body acne. um...what? groders. this drug trial is good because she can do it anytime, so if she does 2, and it doesn't work, she can try this one. with the full body acne. um...what?

so, i have some serious calls to make tomorrow, and then i have to call the nurses to tell them what we want to do, so they can get the ball rolling. obviously time is of the essence.

but, believe it or not, that wasn't what made the day suck.

i have been having a really difficult time being with my mom.

i know i've talking about how much she's changed, and the changes make spending time with her difficult for me. she's just not there.

my biggest fear, as i was driving back to the bay area from la, the day we took her to the hospital the first time, was that she was going to die before i could say goodbye. once i got there, and she was SO out of it, my biggest fear was having lost her, the mom that i knew, and never getting her back. the morning of her surgery, the steroids had reduced the swelling so much that she was really alot like herself, and it was such a huge relief. even post-surgery, as she came off her morphine, she was very much like herself. but i feel like that's less and less the case now. even talking to her on the phone, her speech is always a little slurry. she's really forgetful. i am assuming this was from the damage done to her brain during radiation, because it wasn't from the surgery.

i kind of realized on friday that my mom, the way i know her to be, might be gone forever now.

the doctors have said that she should regain brain functions over time, and that the fogginess will go away, but how much time do we have?

also, bottom line, i just miss my mom.

allen came to the appointments with us. he doesn't always come. mom said she thought he felt guilty for missing the last one, which may be true, but i think he worries about her driving all that way by herself, which i fully relate to. historically, allen and i have had our issues. i don't enjoy spending time with him. but he and i are the first line of defense here, and there was something really tender about our agreement that mom wouldn't be driving between redwood valley and marin herself. we don't connect very often, but we did on this.

neither of them go directions to the appointments. we got lost in china basin, following a 15 year old map of san francisco in an area that has been totally transformed by development within the last 10yrs. mom left the information about where her first appointment was in the car. she had to take an ativan (is that right? ativan? adavan? whatever.) because she gets anxious in her mris, and it made her, if possible, even more out of it. between allen and i, we figured out how to get from china basin to ucsf, but it wasn't fast or pretty. we took a street that i think might contain the most stop signs per mile of any street in sf. it was especially perplexing because we were only one street over from california, which moves really fast. more on allen's driving later. again, mom didn't know where the second appt was either. she got it mixed up with the room number of her friend, who was in the hospital for stomach surgery. 

i can't trust her to handle anything, at this point. she just can't do it. she's just not together enough. i asked her if she'd be willing to let me be the contact person for all doctors' appointments because the whole 'we don't know where we're going and we don't know how to get there or who to ask for' thing is making me crazy. she laughed about it at least, and said that that was fine. almost the only portion of her that remains untouched is her sense of humor, which, if you know her at all, is pretty much the most important part. actually, i had been judging her total mental capacity based almost solely on her sense of humor, so it's taken me a while to fully see how much the rest of it has deteriorated.

i find myself not wanting to spend time with her. between allen's terrifying driving all day and mom's sudden transformation into a 100 year old, i couldn't wait to get away from them. and i never feel that way about my mom. allen, sure, but never my mom. i just don't know this confused lady very well yet, and i don't like her yet.

i am going to have to take a bigger hand in things. i think that that's my new job. i'll start spending longer chunks of time up in RV again, and help out more with things. partly because she's dying slowly (very slowly, but dying nonetheless) and partly because i don't trust her to ask for help when she needs it. 

she's eating like crap. we went to lunch at max's and she ordered a HUGE french onion soup and a half pound of fried calamari. the combination of those two elements makes me feel queasy just thinking about it. she's always been a perplexing food combiner, but this hits an already sore spot. in the beginning of all this, we were told about a doctor in colorado who is considered the foremost expert on the link between controlling cancer growth and nutrition. she is supposed to have a lover who has the same kind of cancer mom has, and to have controlled the tumor's growth with nutrition for 10 years. given that only 3% of people with this specific type of tumor live to see 2 yrs after diagnosis, that's fucking amazing. her rates are reasonable, and she does phone consultations, and designs a personalized diet for your type of cancer and your lifestyle. we got a packet of information on her, and i spent a long time reading the things she'd written on her website. i was really excited about it, and emailed it all to mom. and this was the first of many times where she just wasn't that interested. i mean, in theory, if i set it all up for her and made it happen, she'd go along with it, but she wasn't interested enough to do it herself. this happened with the chinese herbalist who is really well respected in the marin cancer community. sure, if someone else handles it for her. 

this nutrition thing is not complicated, though, so she could easily do many of the things herself, having just read the articles. it's pretty obvious, too. basically, tumors thrive on inflammation and sugar. things that cause inflammation are animal fats, most common vegetable fats, sugar, spicy foods. so, if you avoid the bad fats, eat more good fats (the omega 3s that we already know are good anyway), cut out sugar, and keep the spices to a minimum, which are pretty obvious dietary restrictions anyway, you can help slow the growth of your tumor. this doctor lady isn't a quack, she's recognized as a normal, very intelligent doctor, and her ideas aren't controversial. and mom can't be fucking bothered to stop eating gross food. if she said, 'dude, i'm dying. let me eat some damned cheese' then i'd be able to get it. okay, i don't agree with it, but she's made her choice, so let her do it. but again, like everything else with her cancer, there is no sign of conscious decision-making. she's just doing stuff. if i ask her about it, she'll meekly admit that i am right, but keep doing whatever she wants to. oh, except she tried to half-heartedly convince me the fast food thing wasn't a problem because they aren't using trans fats anymore, which isn't the issue i'm talking about anyway. i mean, she shouldn't eat that way because she's overweight and feels like shit now because of it, also, but i'm talking about inflammation, which hasn't got anything to do with trans fats.

lu and her sister were shopping at the village, across the freeway from max's, and they came to the restaurant (because mom, already the world's slowest eater, has slowed even further) to give mom a hug and a kiss and to save me. i have never needed saving from my mom ever, and i almost cried with relief to get away from mom and allen on friday. i drank a lot with them and tab that night, trying to wash away the despair of the day. i had a great time, but, as with all despair, it was there the next morning.

a separate weird thing happened at the appointment, though. mom asked if this was going to kill her, her cancer. so, this question is weird, because everything i've read and heard says that, barring a bona fide miracle, there is no questions that this kind of cancer will kill her. she knows this. her doctors have not tried to make it seem like she'll live to be 100 and that this is just a little bump in the road. she feels like it's a bump in the road, but that's despite any evidence to corroborate. so, it's scary to me that she asked that. but her doctor was kinda maybe about it. he said that if the success rates were still the way they used to be, with only 30% of patients showing any response to treatment, he'd never have gotten into the field. (he's really, really young.) but, he said, the new drugs that we're talking about using - options 1-3 - have really increased the lifespan of people with this cancer. but i think that what he wasn't saying was, 'yes, you're going to die from this, if you're not hit by a car first, but you'll have longer to live before that than you would have 5 years ago.' maybe it's not in his best interests to tell his patients that they're going to die soon, because they'll just give up and stop any treatment at all, but i didn't fully appreciate his non-answer, which was just a fancy way of saying, 'probably.' well, i don't think mom felt like it was 'probably,' i think she heard 'maybe.' 

just to be clear, i am not trying to rob my mom of her hope. i understand that hope, of some kind, is supposed to be helpful in this kind of thing. i am scared about the line between keeping the hope alive and burying your head in the sand, or disconnecting from reality. she is so not there, and so not seeming to prepare for her death, or thinking about what that means, or how she wants to spend the rest of her life, that it's as if she hasn't accepted it. and, this doctor's good intentioned fancy answer just seems like it'll reinforce that behavior. for a while, it seemed like she was looking at the tough stuff. she initiated conversations with allen about things he might like to do with her before she dies. she had a few things she really wanted to do herself, and she did some research about them. and then the teensy ember of motivation just seemed to wink out. 

i had a long talk with my dad the day after her appointment. it ended in me crying at book passage, on my cellphone, sniffling loudly, much to the consternation of several customers and employees. i guess i was bringing everyone down, hunkered in the aisle between joyce carol oates and cormac mccarthy. sorry my sadness of my mom's brain tumor is bumming you guys out, book passage. i'll try to become overwhelmed by the grief of my loss in a less obvious way. geez. 

anyway, the gist of the conversation was that mom has probably begun the slow descent into death, and that i should start assuming that anything that we do needs to be orchestrated by me. we had talked about going to tahiti, and, if that happens, i'll probably need to treat it like traveling with a child. that's a tough change to accept. at that point, i felt so exhausted from the day before that the possibility of traveling with her seemed out of the question, but i am getting closer to it.

i need to keep working on acceptance. accepting that this is who i have as my mom for now. maybe it'll get better, maybe it'll get worse, but this is who's here right now, and she's my mom - the only mom i'll ever have - and she is probably dying. going from my mom being my best friend to my mom being a stranger whose company i don't enjoy is not a pleasant transition. and ultimately, since the suffering comes from the gulf between reality and my expectations, and since reality doesn't appear to be especially impressed with my expectations, i would be better served focusing my energy on letting go of those expectations and finding acceptance of reality.

but i am not there yet. i still hate it.

a few happier, unrelated notes:
1) this is very, very cute. try to make it through the whole thing, because the ending is really cute, too.

2) shannon and i made an offer on another great house, which might have been a huge mistake, since our lives are kinda falling apart and we've got more than enough to be going on with. but still.

3) i have started a new blog, on another website. i think i'd like to route everyone over there, eventually. it'll be nice for people who aren't on myspace, so they can comment. not like i get a whole lot of comments anyway, but still. this is it.

Thursday, July 12, 2007

HARRY POTTER!!!!!!!!!!!!

alright, pals, i'm freaking out over harry potter. again.
i have re-read book 5 (the order of the phoenix - so dark! sirius!!) and am almost done with book 6 (the half-blood prince - better than book 5! DUMBLEDORE!) and i am totally primed for the release of the new book and the new movie.
here are my concerns about both:

1) the movie - emma watson is so fucking terrible that it makes the movies hard to watch. as, as hermione gets cooler and cooler in the books, emma watson has stayed utterly dreadful. i am dreading watching her fuck it up on screen, and totally suck, again. also, i don't think the kid who plays harry is cute enough. doesn't harry sound like he's a little bit of a hunk? and that kid is really not at all a hunk.

2) the book -'s the end, guys. the end. like, no more, allegedly. this book had better be so fucking good. i am almost guaranteed to be disappointed by it, because i always loathe endings and am really resistant to them. it's THE END.. okay? and more people will die. how is that possible? poor harry is going to end up beating valdemort, but having to spend the rest of his life with dobby or something, because everyone else has been sacrificed in the same of sensationalism.

some thoughts about the books, as i am rereading them:
1) book 5 is an annoying book. harry is a jerk the entire book. sirius is being a jerk alot of the time, too. i don't think that rowling did a good enough job making sirius likeable, because he's mostly a jerk. and did she really have to kill him? like harry hasn't suffered enough. jesus, woman, leave the kid alone for a second. i know he's bitter because stuff sucks for him, but stuff sucks alot for him is book 6 and suddenly he isn't really a jerk anymore. 

2) book 6 is what i'm talking about, people. this is a good fucking book. it's funny, hermione is a bad-ass, ginny is, too, plenty of house elves and kissing. excellent. and, i know the whole world was surprised about dumbledore, but i saw that shit coming a mile away. he's barely in the other books, except as a calming presence, so it's kinda guaranteed it'll be him, since he's in book 6 so much. um...i can't remember the details, because i am not there yet, but isn't the half-blood prince valdemort? and how can harry not realize that? it seems pretty fucking obvious. also, SNAPE!! WTF?! what's he doing?! i'm not there yet, so i'll have more to shout about this afternoon.

you guys, what if this next book really is the LAST book? like, that's all we get. 

i am dreading it.

i am going to read the last book really, really slowly. like, a chapter a day.

so don't ruin it for me. i have to find closure in my own way.

on an unrelated note, mom's next big doctor's appointment is on friday. it's not a huge one, but it'll determine what happens next with her treatment, so it's a little bit of a big deal. allen's coming and i am not thrilled about that.

Tuesday, July 10, 2007

not much.

-i am looking for a job. any ideas? i need something that i can leave easily in september, when i go to costa rica. also, i need to make some buck$$$.

-netflix lets you drag and drop movies to the place you want them in your queue and it's sad how excited and relieved i am about it.

-now that i am not working, i have about $2000 worth of things that i REALLY want right now. for example:
-an iphone. i am trying not to freak over it, but i am already sweating.
-this sweatshirt.
-these gorgeous boots.
-these also amazing boots.
-this purse my deere calhoun that i can't find a picture of, but that is amazing.
um...i'm tired of not having enough money to do/buy the things i want. okay?

-i joined this website called, for book nerds, and i don't have any friends, so if you want to talk about books with me, look me up. 

-i am rereading books 5 and 6 of harry potter, to get ready for book 7. dudes, book 7 is going to be totally heavy duty. just so you're ready.

-my mom is still pretty much dying of cancer, but it's so slow that i have to live a life, and be a person, at the same time. it's fucking weird.