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.
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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.

love,
kira

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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.

thanks,
kira
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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.