Which disguises the fact that I reached 7k yesterday and hated it. My main problem has been my failure to be able to "see" my bookshelf in my head. I used to have effortless recall but I think it was related to teaching and I don't do much now. But then I was at Big Green Books yesterday and Tim recommended Who Next...? A Guide to Children's Authors and it was perfect in that all it does is name an author and then list six more you might like. It's sort of a book title thesaurus and I recommend it if you have kids to buy for. It tells you almost nothing about the books other than genre* but that's fine because I have read 90% of them, I just couldn't recall the names.
So suddenly, writing that was effortful, is just flowing along. I couldn't be happier. Especially as today was a meeting day and I hadn't expected to write at all.
*Neil Gaiman crops up all over the place which I think is testimony to the diversity of his outputs/.
One niggling question: If everybody was eating enough, why did the population decline? Probably, the professors say, from sexually transmitted diseases after Europeans came visiting.
You know what I think? I think the slave raids of the 1860s, in which half the population of the island was carried off, didn't help. Also, and I am just spit-balling here, neither did the introduction of TB and smallpox. But STDs plays into the whole sexy sexy promiscuous islanders trope.
Also a bit puzzled by this:
When Captain James Cook visited there in 1774, his crew counted roughly 700 islanders
The population was about 3000 in the 1860s, which either means the place managed to sustain a 2% population growth for 90 years, Cook missed counting some islanders or some third option.
Also posted at Dreamwidth, where there are comment(s); comment here or there.
So lessons 2 and 3 go hand in hand. They’re lessons I’ve been working on learning for some time now but they really hit home and gosh I hope they stuck after this year.
Way back in the dark days, when I was at my very worst, I really thought, had decided actually, that I would never travel again. And that was ok because I’d done a lot of travelling and seen a bit of the world. And even though I *love* travelling, it was ok that I just wasn’t going to do that anymore. Except that a) that was my anxiety, OCD and depression talking and b) I LOVE travelling. And I wanted to go to World Fantasy Con in Saratoga Springs. I was just starting to fall into the scene, starting up Twelfth Planet Press. And a lot of Aussies were going that year. And Tansy said to me, instead of deciding that you can’t go, why don’t you figure out *how* you could go – figure out what you’d need or how you can navigate (the OCD). In other words, if you need to take a bunch of antibacterial handgel and use it every five minutes but it enables you to go and have the experience, then Do That. (And I’ll add that that was before the world freaked out about Swine Flu. Now it’s not weird at all to use hand gel and wipe down your tray or whatever. At the time, I had to be in therapy. But whatevs.)
Firstly, how lucky am I to have such awesome friends? Secondly, I went. I fell in love with WFC, I found my home. It grew my friendship with Jonathan. Going freed me – in more ways than one. It broke my mindset about not doing things that might scare me or put me out of my comfort zone. It opened my publishing world. And it ended my relationship with my ex – I always had this feeling that if I went to WFC, I’d come home single. And I did. And it was the best thing that could have happened to me at that time. And the funniest thing was getting on that plane to Sydney? The OCD melted away and I didn’t even really need a whole bunch of the management tools I’d put in place to deal with myself.
In some ways, looking at the world like that – what do I need to be ok with this [whatever "this" is in the moment] was a great tactic. In others, I guess it might have fuelled my OCD. I think C just works around what’s left of that. At least it’s nowhere near as unhinged as it was.
This year I’ve had a lot on to confront in terms of wanting to push forward and do things and having to fight off the darkness in my head. And I’ve had to work a lot to find management tools to make it ok. Or as Tansy now says, I’ve had to figure out how to hack my own brain. Lots of this year was about taking it a day at a time and there’s something nicely zen about that, or there would be if being in the moment wasn’t about how sick I felt. I had some really big, confronting decisions to make. They required being honest with myself and my work arounds. I was lucky to have so many people around me to discuss them with and to feel like I was in a safe, nonjudgmental place. And standing now on the other side of that, I realised that in troubleshooting ahead of time and making choices that were the best ones for me, meant that I could have positive experiences. That I don’t always need to push myself over the edge to prove some point to myself about … I dunno? I can actually be kind and understanding of how I tick and work with, not against, that. And that by doing so, I ensure that I am mentally robust.
And this lesson leads into the third, and possibly most profound lesson I learned this year. This lesson was to learn to tune out the white noise. Everyone has an opinion and everyone has advice. But the most important thing to remember about that is unless they are privy, they most likely are not giving that opinion or advice within the context that is relevant *to you*. Something can be true and not applicable to you at the same time. Something can be “the best choice” in a level playing field but if that’s not where you are playing your game, it may no longer be best. And what I hope I learned this year is how to reduce the value I have previously placed on white noise. To not care so much what other people, out there, think about the choices that I make or who I am or what I choose to do or how I live my life. But also, to be less judgmental of others and their choices, since no doubt I am not privy to the context within which they made theirs.
- Current Mood: complacent
- Current Music:Nick Drake, "Northern Sky"
But what she was really doing in the first instance, though, was standing up for America's aggrieved white Christians, a cohort that's watched in frustration as ethnic populations have grown in size and political power, causing Norman Rockwell's America to fade before their eyes.
Now it is true Rockwell's American includes scenes like this:
But not only is that a reference to FDR's Four Freedom's speech, Rockwell's America also included scenes like this:
Also posted at Dreamwidth, where there are comment(s); comment here or there.
Oh, and the story's illustration is gorgeously understated.
We've only been home for six days, and the thought of leaving again--for another long, interminable stretch--is indescribably horrifying. I mean, truly, that I do not have words that encompass the feeling I get when I consider the limited time I have here. There's no choice, of course; I have to go through with and finish the program in the UK.
If nothing else, it's been a vital life lesson about what I'm capable of--or not.
Actually I'm in Taichung, but that doesn't lend itself so well to puns. It was a long journey from Bristol, but I whiled it away by finishing Wuthering Heights, a book I'd not read since I was about 16. It made quite an impression on me at the time, to the extent that I found I remembered almost every scene - but my emotional response was quite different this time round. On the first occasion I think I was secretly rooting for Heathcliff throughout - not as a romantic figure but as a youngest "sibling" exercising his revenge on the whole pack of his oppressors. This time I just wished he'd get over himself: his narrow obsession was tiresome rather than sublime.
Anyway, a couple of hours before landing in Taipei I was given a landing card to fill in, which had a section asking me for my visa type and number. Reader, it had never occurred to me to apply for a visa, and I spent the last two hours of the flight fretting about whether I was going to be unceremoniously booted off the island before I'd properly set foot on it.
I needn't have worried. Taiwanese customs were a dream, visas unnecessary, queues non-existent, my hostess exemplary, my hotel sumptuous, my bed soft, and I knew no more until I awoke at 9 this morning.
Random first impressions of Taiwan - more will follow, at random intervals, randomly ordered.
Anyone fleeing to Taiwan in order to escape Christmas muzak and plastic Santas will be making a big mistake. Both are here in abundance, along with Mcdonald's and Starbucks, who are my hotel's next-door neighbours. You know how people in the West always think that a Chinese restaurant must be good if they see lots of Chinese people eating there? I wondered whether I could create the same effect in reverse by buying a Big Mac. ("She must know what she's doing - she's a Westerner!") I find this an unrealistic scenario, but I'm not sure why. At any rate, I didn't put it to the test.
The Taiwanese like to deal in big wads of cash. So far I've been given one wad to reimburse me for my plane ticket, and another (unexpected) as a gift for the talk I gave today. I remember my Japanese teacher telling me that the Japanese don't use credit cards as much as one might expect for such a gadget-happy nation, and I wonder whether it's the same here. There is certainly the same love of gadgetry, as this parable in today's news illustrates.
About one in five people wears a surgical mask - including our waitress this evening and several of the students in my talk. I thought at first this was about pollution, but apparently it has more to do with a wish not to spread (or catch) germs. This information makes retrospective sense of a multiingual announcement I heard on the escalator yesterday at Taipei station, which in addition to reminding us that we should should keep hold of the handrail added the dubious assurance that it was "periodically sterilized". I hadn't been thinking about handrails as havens of dirt until that moment, but you may rest assured that I promptly let go.
So far, so good, anyway. Everyone is amazingly friendly, the students all wanted their picture taken with me, and I feel valued above my worth (but not so far above as to be awkward). I also heard my first Westminster chimes to signal the start of a lesson: little did I ever dream that the lesson would be my own. Pictures will follow at some point: the one above is for kalimac.
Let me explain.
No, there is too much. Let me sum up.
While I was in therapy yesterday morning, one of my National Institutes of Health contacts called, a research nurse who’s handling study recruitment. They left me a voicemail saying the Principal Investigator on one of the studies I am interested in would accept a CT scan from from my treating hospital within the last 30 days in lieu of trying to schedule a CT at the NIH facility on my arrival. (Grudgingly so, I gather.)
I knew I had an active CT scan order in the system at my treating hospital. The original intention of this order was for me to have my two-month screen in January — we’d been proactive about getting into the system. So after thinking this through, I called my treating hospital. I found out that my oncologist is on vacation next week. If I wanted the scan done and released to me in order to get a copy to send to NIH, it had to be done right away. Otherwise it would get stuck in my oncologist’s queue during their absence, and be of no use to me in my current timeframe. I wound up talking to Radiology scheduling, who said they could take me immediately if I could get there right away. (As it happened, in the course of this conversation I was driving north on I-5 very near the facility. Yes, I was using a headset.)
I cancelled my already-rescheduled lunch date with Jersey Girl in Portland and popped by to have the CT scan on a right-then basis. Afterwards, I went upstairs to Oncology and politely asked about having a stat read request put on the scan. I was also trying to figure out how to cue my oncologist to release the scan to me as soon as possible, as they do not have clinic hours on Tuesday. The team at the Oncology unit told me to call back into the triage line an hour or two after lunch and see about getting a message to my doctor.
I then spoke to the NIH nurse, telling them I'd gotten the CT done on-demand and was hoping for the results to be released that same day so I could get a disc from my treating hospital’s Imaging Library and express it to them. A rather hilarious conversation ensued.
NIH Nurse: "My jaw is on my desk. You are the most self-directed patient I've ever dealt with."
Me: :: laughing :: "That's a polite medical term for 'pain in the ass'."
NIH Nurse: “Nooo… That's a compliment."
They also asked me if I could get a brain MRI to check for mets that might have crossed the blood-brain barrier. This is quite rare in my type of cancer, but it is possible. I told them I was dubious about getting that ordered here in Portland, and we agreed they’d schedule the brain MRI at NIH, probably for the afternoon of 12/30.
I got the appropriate NIH shipping address for delivery of the Imaging Library disc, then focused on contacting the clinic about getting my oncologist engaged to review the new CT scan and release it to me ASAP.
As it happens, my oncologist had already seen and released the scan promptly, even before I had reached out about having them read it. They emailed me and asked me why I'd had the scan early, was it for the NIH studies? I replied that it was, and mentioned the brain MRI request. Meanwhile, the Imaging Library was cooperative about releasing a disc to me immediately. They only needed a 45-minute lead time. So Lisa Costello took me back over to the hospital complex to score the disc.
About then, my oncologist went ahead and ordered the brain MRI. (All of this was happening more or less in realtime at this point, while Lisa drove us back to to the hospital to go up the hill to the Imaging Library.) I got on the phone once more with the schedulers, who actually found me an opening this coming night. It’s awfully hard to get an MRI on demand, as there’s a long waiting list for access. I have a 9:45 pm brain MRI up the hill in the main hospital, which should take about 45 minutes. There is a stat read request on that order as well.
My oncologist has agreed to watch their queue Thursday morning, and release the MRI results to me ASAP. I will then make the request to the Imaging Library and get it back out to my contact at NIH that same day for Friday delivery, if my luck holds.
This should improve the intake process at NIH as they will have everything they need to proceed, or to scrub me from the study if they don't like something in the imaging files.
By the time I got home again yesterday evening, I was so exhausted I physically hurt. I was also having at attack of the chills, which may have been exhaustion, a reaction to the CT dye, a system issue stemming from my advancing cancer, or all of the above.
I want to note, with respect to my recent comments about constant crisis and never being able to hold a schedule, that yesterday was a perfect example. I’ve now had to reschedule Jersey Girl twice due to unexpected medical requirements. I spent most of yesterday on the phone, running around town, or actually in a procedure room, on a day that had no medical activity on my calendar when I woke up other than my therapy appointment. I’d actually thought to have an easy day.
This is how my life works lately.
As for the substance of yesterday, while I feel pretty darned accomplished, I also recognize that all of these victories are fundamentally futile. The CT results were frankly quite depressing. We’re fighting rearguard actions in a war the outcome of which was confirmed last spring. This does not stop me from grabbing every chance I can, wringing what I may from each passing day. But last night when I was in bed shivering under extra blankets and feeling logy and strange, I kept wondering if all this was worth it.
So far the answer is still yes.
Interval enlargement of nearly all of the pulmonary and hepaJc metastases.
That’s doctor speak for “some of these tumors have almost doubled in size in the last six weeks, and a few of them have grown so much they’re fusing together.”
Nothing whatsoever surprising about this, but it is discouraging as hell.