fictional: (dr. who family)
Yesterday, we went to the doctor for the results of the latest PET/CT scan. And the news was what the doctor called "mixed" and I call "sucktastic".

Doctor: (examines my dad much closer than usual) So, do you have any new pain? Any coughing? Any anything?
Kali's Dad: No...?
Doctor: No? Really? ...Really? Hmm. Are you sure?

(Kali & Kali's dad exchange glances, which basically indicate, oh god, this can't be good.)

Doctor: Well. Hmm. The news is... mixed.
Kali's dad: Hit me.
Doctor: So. Basically the tumor is smaller. A little. Well, the one in the lung's upper lobe anyway.
Kali's dad: ...
Doctor: Which means the chemo's killing it. A little. But more importantly, the cancer is more metabolically active. Than before. So basically, it's smaller, but it's getting ready to replicate like crazy. And in the lymph, while the mass is smaller, it's more, um, spread out. Which isn't a good sign.
Kali (silently): No I'd call that a fucking bad sign.
Kali's dad: Right...?
Doctor: So, the chemo's not working, and it's killing your kidneys, so we're gonna stop it.
Kali's dad: Okay...?
Doctor: Instead we're going to go with our second line defence, which is a drug called Tarceva. Chemo had 40% chance of working. This has a 20% chance. It's hard to tell because normally it doesn't work at all in people who've smoked (my dad smoked two packs a day), or tumor cells that don't have this particular genetic mutation (which my dad's tumor doesn't have). But your tumor doesn't have the mutation that DEFINITELY says it's not going to work, so we're going to try it.
Kali: This might seem like a dumb question, but why not finish the course of chemo that you had planned? I mean, if it is killing the cancer cells, maybe it just needs more time to work?
Doctor: We don't want to waste precious time.
Kali & Kali's dad: !!!!
Kali: Wait, tell me again, how is this news MIXED?!?!

Le sigh.


Jul. 9th, 2009 07:25 pm
fictional: (dr. who family)
Today, for the first time, my dad fell asleep right in the middle of our conversation. At first I thought he was just joking around, but no. He wasn't.

I realize now, and again -- it doesn't seem to matter how many times I do it, the realization still feels fresh and new -- that this is not going to get easier. I will not wake up one day and get to go back to the way things used to be.

Never. Never. Never.
fictional: (Default)
As a synonym for female genitalia, it leaves something to be desired, no? Oh spam filter, what would I do without you...

On another front, dreamwidth!!! I feel so out of the loop. This is definitely a sucktastic time to never be near the internets. It is impossible to perform the appropriate amounts of suck-up networking. Anyways, if any of you have an invite going spare... *bats eyelashes*

News from the cancer fields: Things mostly the same, except the bills have started coming in. I hate them. They are incomprehensible, the people you can reach by phone are, apparently, paid to be unhelpful, and it is infuriating. My parents continue to be remarkably incompetent for the educated, sensible people that they are, and I DO NOT UNDERSTAND WHY. Last night, my dad had a fever. Does my mother call the doctor? No. Does she read the nice red, crab-decorated notebook that I have prepared where I write down everything that happens, all the instructions given, and all the doctor's contact info? No. She calls me. Whereupon I have to do all of this, over the phone, and then speak to the doctor, who recommends an antibiotic and calls it in -- then I have to come to their house to pick up the prescription card, run it to the all-night pharmacy, wait to get the prescription filled, run it back to the house. In the middle of the night. (D. [blessings be on his head] drives me around, so this is less aggravating than it could have been, and I'm happy to do the running, but what the fuck????)


Also, Eve Sedgwick has died. I was extremely fond of her, and will always be inexpressibly grateful to have had the opportunity to work & make things with her, if briefly. On my very first day at the Graduate Center, I met her... and was blown away in a wave of fangirliness -- and since I was already sort of nervous and freaked out with first day jitters, it was all sort of overwhelming. She gave me an enormous cuddly, comforting hug, and I've never forgotten it. It was always a shock to realize that such a fine, penetrating, incisive intellect was housed in such a... snuggly exterior. She was profoundly kind, and I will miss knowing that she is in the world. Sigh. Also, cancer. FUCK YOU.

Anyway. How are you guys doing?

Here is some cool stuff:

a video shown at a Sony executive conference earlier this year regarding the information age. I thought it was pretty neat.

And the Indonesian hobbit skeleton goes live today at SUNY Stonybrook for the first time.

Also, Trek Yourself! Cheezy goodness, sponsored (appropriately) by Cheeze-it. You haven't lived till you've seen yourself as a Vulcan. Live long and prosper, kids.
fictional: (whiskey tango foxtrot)
This has clearly been a poor time to not be on the internets! But alas. While I was otherwise occupied, it seems amazon has been, well, having epic fail. Which sucks, for many, many reasons but is also hugely irritating because I FUCKING LOVE BUYING BOOKS FROM AMAZON. And is also sad, because okay, evil, corporate, whateverthefuck, fine. I'm used to it. We're all freaking used to it, aren't we? But aside from being bigoted, it's also insane. Because it is not good business practice to try not to sell books if you're, you know, a book shop. And sex has been selling for a long time, my friends. And teh gay? ALSO DOING PRETTY WELL, especially of late. Also, James Baldwin? Come on.

And another thing, glaring incompetance at handling the internet from an internet company. This is web 2.0, folks. Did you think that if you just ignored it, people were just going to shut up and go away??? Um, no. This is the internet; being outraged is its hobby. Ditto writers, critics, fans, etc... and all of them have access to keys, and big, loud, cybervoices. Snuggling under easter eggs and hoping problem vanishes = no good. Sigh. Anyway, y'all have heard this already from a myriad of places that are not me, so I will stfu. But yeah. You know the drill, write email, sign the petition. Speak up!

Summing up my thoughts pretty successfully are the salon broadsheet and [ profile] bodlon's post, where he also discusses the bias implicit in the way queer stuff is considered more "adult" than equivalently explicit straight material.

In other news: my dad is bad-tempered, tired and discomposed by various bodily functions not quite operating via standard parameters. I'll just leave it at that.

Last weekend, we had the cousin-brother invasion. God, so many of my boys in one wee nyc apartment. It was insane, oldest + wife, another one + boyfriend, and the second to youngest. Plus me and D. of course. All the boys put to work moving sofas, dressers, chairs etc. D. was an enormous hit, as he is immensely handy, and also I think they all have little boy crushes on him. Some more platonic than others. The one with the boyfriend, the boyfriend and I did a fair amount of non-platonic heckling at any rate. Fun times.

My dad, of course, decided he wanted to also move things. And mop the floor. I became afraid he was going to have to be physically restrained, but instead after a few minutes of exertion, he simply fell asleep.

I tried to help with the moving of things, but was held back by a horrid pinched nerve or something in my back, which has been going on for a week now in what I can only describe as fluctuating between excruciating agony and bearable pain. I have an appointment with a chiropractor today. I've never been to one before, and am terribly nervous.

Last night I couldn't sleep and watched Bright Young Things. David Tennant plays unsympathetic really well, it's amazing. (I also am beginning to think that the Doctor is the sanest of his many roles. Frightening thought.) Anyway, it's a fun time, this flick, even with the too-hollywood romantic ending. And the actors! Spectacular, one and all.

Then I had terrible nightmares about byzantine intrigue and magical plots and wormholes surrounded by green and blue rubber bands. If the bands were cut: apocalypse. My father had the scissors, and cut them as I begged and pleaded with him not to.

My subconscious is terribly boring these days, don't you think?

catching up

Apr. 7th, 2009 11:13 am
fictional: (dr. who family)
It has been a while since my last post; frankly, it's all been pretty shitty 'round here, and I don't want to be one of those lj'ers -- you know the ones I mean.

But still, news is news, and ought to be recorded, and perhaps even shared. (I think?) So, for those of you following along at home, we now know my dad has lung cancer. Stage IV. Spread to brain, lymph and, as we discovered yesterday, spine. (Kind of like we're playing some sort of terrible game of reverse bingo; we keep getting squares that, well, do not want.) He starts chemo on Thursday.

He had one open brain surgery; and then a closed brain.... with a gamma knife. Does that not sound like some awesome light saber-y weapon? He's got a titanium plate in his head, and soon will be injected full of platinum. It's rather like living on the edge of sci fi, but not in a fun, happy way. Then I guess those novels never really are.

What else? I'm trying to write my dissertation, while spending as much time at my folks' as I can. This is... less successful than it could be, but I hope once we get into more of a routine, it will be better. It's interesting because while my concentration has (for some reason!) suffered, the urgency for finishing has... well, let's just say it's increased. A lot.

However, one can always distract oneself with tv. Supernatural, man. Metatastic episode for the win! (Better than metastastic, anyway. *g*) Seriously, I think having slash mentioned was awesome, I think the boys would react that way to Wincest, and I note they weren't freaked out by the gay, just by the brother-thing. Also, Cas for the win with his wink-wink-nudge-nudge. Yay. Also, CHUCK. I love it. LOVE IT LOVE IT LOVE IT. Unfortunately, I am really dreading the next ep., but shall hope for the best.

I keep trying to like Dollhouse, and thus far am mostly failing. They had one good episode that I can recall, but even that was only good in comparison to the rest. It's glossy and badly paced and takes itself so seriously. It's so freaking earnest, which from the Joss, I kind of resent. No, actually there's no 'kind of'. I just resent it a whole lot.

Kings is pleasing. I'm not caught up -- have only seen the first two or three eps? But I'm enjoying it. Wrong!New York is gorgeous; I love the mythic adapation, and I'm waiting anxiously for my canon slash. Also, Ian McShane is amazing.

AND I am finally watching S3 of Friday Night Lights. Its 2nd season was SO dreadful; this season rocks SO HARD. It's made me and D. rise out of our chairs and pump the air on several occasions, and has on occasions too numerous to catalogue, turned us into spastic, twitching joygasms. I can't wait to go home tonight and watch more.

Then there's fic. I am still working on chap. 2 of Enough to Go By; it's my turn to send the next bit to Rach. But it is I am slow like molasses.

Anything more? We have cousins of all stripes descending on us this weekend, from London, from Rochester, NY, from New Delhi.

The world, it continues to suck. I continue to... not pay attention. I watched the coverage of the Binghamton shooting while waiting for my dad to get his bones scanned. I also saw a little kid wandering around with his chemo attached to him. He had a purple triceratops that he held by the tail. His dad followed him, board game under one arm; I can't describe to you the look on the dad's face.

Fun times. (Like Alison Bechdel says, we put the fun in funeral, no?)
fictional: (dr. who family)
OMG, so happy to be out of the hospital. AND on the internets again.

So first of all, my dad is now home! He is recovering from the brain surgery really well. Every day I see more improvement; he can now stand on one foot again (though still a little wobbly) and his cognition seems really close to normal, aside from a little forgetfulness. He has definitely lost some vision, but as he says, if that's the worst side effect, they can keep his peripheral vision as a present, gift wrapped.

We are now waiting to hear from the oncologist (regarding the mass they've found in the lung; we need to do some scans to see where else the cancer has metastasized to, and what stage it's at, etc. etc. and what the treatment should be). We also need see the neurosurgeon for follow up visits regarding the brain surgery. (Every time I type or think or say brain surgery, I keep expecting it to end in a joke/maxim/cliche of some kind. It's weird.)

We are also dealing with insurance related fuckery. [Yes, we have now been dumped into the toxic waters of the American Healthcare System; IT IS EXACTLY AS CRAPPY AS EVERYONE ALWAYS SAID. Try to avoid, if possible.] The social worker at the hospital, Victoria [called Vicky; when she says it, you can HEAR that it is spelled "Vicki" -- 'i' dotted with a little heart, natch], was remarkably unhelpful to me in negotiating the insurance stuff [she also proved deficient in many other respects, including consistently showing up after four hours when she kept telling me she'd be there in ten minutes.] However the lovely and amazing [ profile] faris_nallaneen who is a social worker of A Different Stripe Entirely spoke to her, and [because she is made of awesome] managed to uncover what she [Vicki] was refusing to tell us.

Vicki, you see, didn't want to explain things to me herself; she apparently thought it would be much better at this time for me to go to the social security office, and various other gov't offices to waste several days in hell, and get my answers there, in a much less clear fashion.

It turned out, as well, that she -- and many of the other hospital workers -- thought that we were a) indigent and desitute, b) could not speak English [even after speaking with all of us], and c) [because of these facts???] didn't need good quality care or assistance in navigating the system.
I mean, c'mon? Poor people? They don't deserve good care, right? It's just like natural selection, isn't it? [After I understood this, many previously unclear exchanges suddenly became comprehensible. For instance: Them: "You live in {area that is crappy/kinda ghetto/has govt. assisted housing projects}; Me: Um, no. My parents live in {neighborhood north of there; frankly kinda yuppified/gentrified}; Them: "Really? Are you sure?"; Me: "bzuh?!?!?!"1]

They assumed this apparently because we are a) BROWN and b) I spent most of my time at the hospital dressed with relative sloppiness [jeans & t-shirts etc.] This conclusion makes perfect sense because when you're spending nights in the hospital and your father has a BRAIN TUMOUR, you really feel the need to show up in heels and a suit. It's really comfortable when you're "sleeping" in a chair. Especially when there are catheters and blood gushing everywhere, and you're the one in the fucking barrel because you're an only child, and here you fucking are.


Let me not even start on the PASTORAL CARE people who would NOT leave us alone [her: "Hi... I speak... mostly English"; me (accentless for the record): "We speak English"; her: "Okay, I'll speeeeeak veeeereeeeyy sloooooowly. You're (looks me up and down) Catholic, right? You need (now loudly) A PRIEST? PRIEST? PADRE?"2] And the neuro ICU nurses, who I STILL want to stab in the brainpan, so they can experience their own care themselves and see how they fucking like it. Let's see how non-irritable they are. Charming!

HOWEVER it is not all terrible. My dad's neurosurgery team were AMAZING. Gorgeous hands, one and all, brilliant and thorough and quick and no nonsense, and all had good senses of humour. The resident at the first hospital, the one who rushed through the surgery, was so kind and so smart. (She was cute too, and Indian, and when I was dithering about going through with the surgery, she looked me straight in the eye and said, "if this were my father, this is what I would do." I believed her implicitly, and I'm so grateful.) The nurses in the regular neurology unit were so kind and competent and compassionate, that after the N-ICU people, I almost burst into tears at their awesomeness.

While I'm talking about awesomeness -- you guys! All your good wishes! I will reply to each and everyone, as soon as I have some more time; till then, please know I was touched to the heart by every single comment. Y'all rock so hard.

And as for the folks who've been going through this with me on this end, and helping so much, making food, helping me make decisions, doing driving and transport, communicating for me when I haven't been able to, taking time off from work, just chatting with me to keep my spirits up -- y'all know how much I love you.

Right now my dad's hovering over my shoulder, asking me if we can go on a walk to get him some potato chips. LOL. When I think of how he was on Thursday and Friday... it seems like a miracle. (An annoying, fiesty, curmudgeonly miracle who won't do what I tell him, and keeps trying to order me around and IS REALLY GETTING ON MY NERVES, but a miracle nevertheless.)

And now potato chips. Possibly also, (again as per his suggestion) a melon baller/ice cream scoop in case we need to scoop out any more defective head meat. Why hire other people to do what you can do yourself? Since we're going to be outside anyway.

1Yes. This really happened.
2This too. I kid you not.
fictional: (dr. who family)
Last night, I was sitting in a hospital room, gazing out at the Hudson River. The span of the George Washington bridge is framed perfectly in the window. Underneath there is a little lighthouse, still red, still working.

I had a book about it when I was small, about four or so, The Little Red Lighthouse and the Great Gray Bridge. I read it over and over and over.

(Something about the Little Red Lighthouse and its low self-esteem must have resonated? I don't know.)

One day, my father seized me by the hand, and told me we were going for a walk. He wouldn't tell me where. That was pretty par for the course; he was always sweeping me off on some crazy walk or lunatic adventure -- it would seem entirely aimless at first, and then suddenly we were at the forgotten sunken bridge, or up in the Cloisters, or seeing the Strauss House, and being told the tale of the Titanic for the very first time. Or climbing rocks, and having a good hunt for mollusk shell imprints -- found a few too -- while he described the slow march of glaciers through all this space, and what speed they'd be moving at, painting me a picture with words that lived, with colors and sounds. Or pretending we were birds for a week, so we could figure out how they lived. Or turtles. Or telling me he was secretly a (very well-preserved) Leonardo DaVinci -- that's when I learned about aerodynamics, and the relationship between sculpture and anatomy, and mirror writing. Or mulberry picking, every August. Or taking me to a church, and a synagogue, and a mosque -- my dad is a militant atheist -- and sitting inside them for a while, just to get the feel of these things that move people to such great extremes. It was a long time before I realised every game was a lesson too. It didn't matter; they all came alive. Anyway, he'd never tell me where we were going before we got there; I just had to wait and see. (Maximum drama, don't you know.)

Anyway, on the day in question, we'd walked all the way from our house on 215th st. to the foot of the G.W. Bridge, and then sure enough --- there was a enormous grey bridge, and underneath it, a little red lighthouse, which at the time, you could even still climb up to the top of.

"There it is," he said to me. "From your book."

I stood in awe.

Stories, I had just discovered for the first time, were real.

You know those chicken-soup type stories about the one teacher you have that inspires you, is special, makes a mark, inspires you, et cetera, et cetera? I never had one. Never felt the lack either.

That's because my father has been the best teacher I have ever had. Brilliant and crazy, and so much fun. He taught me physics and calculus, how to kick a soccer ball, to recite poetry and plays, how to arch a single eyebrow, matrices and probablity and logic and base numbers. When I had trouble with math as kid -- fractions and word problems -- he took me home, sat me down, handed me a notebook and a pen, and told me to write down what he said. And he started at the beginning of the history of mathematics -- with cavemen, and learning to count. We started there and I filled at least a hundred notebooks, I think, just writing paragraph after paragraph as he dictated. We started with counting, and by the time we were done a couple of months later, I could differentiate and integrate. He made it into a story.

I was ten years old.

Four days ago, my father was in perfect health. Three days ago, he went to bed, woke up in sleeping in a different position than when he'd lain down. On the other side of the room was a broken vase. He had lacerations on his arm, and his glasses were twisted. He couldn't remember anything about what might have happened. He finally told me about it, and I forced him to go to the ER with me. After a billion hours, he was admitted to the hospital... with a brain tumour, and an (as yet) unidentfied mass in one lung. He had brain surgery on Friday the 13 (!!!); it has gone as well as could be expected.

Now, we are in for what looks to be a long haul.

This is all very hard. We don't yet know anything regarding prognosis. I will be online... not that much -- I'm spending most nights at the hospital, as he can't be left alone, and I want my mother to be able to sleep. All of my friends -- not really friends, more family -- have been incredible through this. You guys are all stars, and I thank you from the bottom of my heart. For those of you, whom I only speak to online, I hope you're all doing well. I miss you, and hope to be back... soon. I know I'm missing moments in your lives, while I'm so busy with my own. It sucks. I hope to catch up with y'all soon.

I want to write another post later with more details, but I must get some sleep before I head back to the hospital.

I'll go back to that same room tonight, propped up on my chair, staring out the window at the flow of the Hudson, watching the little light atop the little red lighthouse flash. It's like a beacon.

Remember, I think, remember. Everything. Every moment. Horrible, petty, grand, small notes of grace and kindness, frustrated rage, fury. Everything. All terrible right now. All precious.

fictional: (whiskey tango foxtrot)
Last night I dreamt that I couldn't sleep. All night long.

I was in an uncomfortable bed at a friend's house; the walls kept closing in. Lights were on. The walls were brightly colored - salmon, I think. People kept moving in and out of the room.

What new torture is this? I don't know how I'll be able to deal with dream-insomnia, for fuck's sake.

Also, my head has turned into an enormous vessel of snot. I am so sick. That's not a dream. I don't think. Unless I'm not actually posting this, in which case the end must be fucking nigh.

Jungian analysis, please?
fictional: (the look)
good things:
last night i managed to write two whole paragraphs on the silly novel type thing that i am working on. (the amount would be pathetic, but it's the most i've managed in weeks);
i cleaned half my house. (well maybe more like a third, but hey, who's counting.);
i fell even more in love with John Cusack last night as I re-watched Grosse Point Blank;
i exhausted myself, so that by the time i went to bed, i was really really sleepy, and didn't have to deal with insomnia eating my head.

not-so-good things:
the sunshine went away;
my stomach decided to try and come out of every orifice it could think of;
i had the nightmares again. those ones. with her in them. could i fucking get over this already? please?;
i still have the rest of my house to clean, and laundry to do;
i'm hungry, and there's no food here;
my head feels like it's been stuffed with sawdust and ground glass, and then, to add insult to injury, it feels like it's been pickled;
and, like Emily of New Moon, i am far too obsessed with italics.

and, did i mention that i'm hungry?


fictional: (Default)

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