tag:blogger.com,1999:blog-190413742024-03-07T16:35:33.515-05:00The Perpetual BeginnerLife's too short to specialize.Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.comBlogger313125tag:blogger.com,1999:blog-19041374.post-59286175379471099512014-11-05T02:35:00.004-05:002014-11-05T02:37:03.603-05:00Coming up on beliefWay back around infusion #3 (we're coming up on #8), Dr. Puzanov told us not to believe anything the CT scans showed us until week 18. This was in context of the tumor showing rapid growth during the early stages of treatment. That kind of expansion is normal, and even a good sign, since if the drug is working, the immune system attacks the tumor, and the tumor becomes inflamed. It's still pretty darned alarming to see a tumor that had been chugging along at about 3% a month for growth expand by 26% in three weeks.<br />
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So at the last CT scan (at infusion #6, the 15 week mark), the tumor showed no growth at all over the six week period. This is definitely a good sign, and we were excited about it - but still in the back of my mind is that little comment "Don't believe anything you see until week 18." <br />
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Well, week 18 was two weeks ago, but didn't come with a CT. A week from Thursday is our next infusion with a CT, marking week 21. I've got all my fingers and toes crossed - please let this be real, please let us have an actual tumor freeze. There's more to hope for from there - shrinkage is always to be desired - but a freeze is the first and most important thing. <br />
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Also hoping that Rob hasn't developed an allergy to the CT contrast dye. He had an interesting rash about 24 hours after his last CT, and no contrast dye will make tumor tracking definitely harder.<br />
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Life otherwise cranks on. After missing an awful lot of school to nausea the first few weeks, we got Aaron under enough control to remove the threat of the truancy people coming after us. And I, in a not so stellar mother moment, let things lie there from then until this last week. Aaron was still feeling crappy most mornings, and spending time lying down in the nurses office at least a couple mornings a week, but he wasn't missing school.<br />
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Then on Wednesday, he was feeling his usual moderately crappy getting ready for school, and threw up once before we headed out the door - so we brought a bowl along. And sitting in line to drop him off, he threw up again just as I was pulling forward to the drop-off zone, and I couldn't do it. I told him "This is ridiculous.", and pulled out of line, and we went to the pediatrician instead. I feel awful that it took that direct a reminder that we hadn't fixed the problem, just the legal consequences of the problem, to get me back in gear.<br />
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So, we still have no real answers, but Aaron has a battery of blood tests being run, a visit to an ENT scheduled this week (his dentist is seeing signs of too much open mouth breathing, and suspects issues there may lead to mucous, and a hyper gag reflex), and a visit to a counselor scheduled for the week following, since stress and school are definitely a major factor in this. During vacations, the rate of morning nausea drops precipitously - it doesn't go away altogether, but it becomes unusual, rather than 2-3 times a week. <br />
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I suspect, based on the last 14 years, that Aaron has a series of things going on, rather than a singular cause. He's always had a sensitive stomach and a hyper gag reflex, right from birth. Add to that, Dad is pretty sure (and I concur) that he started having abdominal migraines about three years ago, a case of reflux, a large double-dose of stress (Rob's situation of course, and 8th grade is proving socially miserable, due to 8th grade boys being at their maximum level of asshole), and chronic insomnia (when lack of sleep will make all of the above worse), and you have an absolute recipe for misery. I'm hoping that if we chase several of these things, we may be able to crank down the physical response several notches.<br />
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Even if it means missing a little more school. After all, our last appointment with the family court for truancy issues turned out to be hilarious in retrospect. It was 3 years ago, when Aaron first started having morning nausea issues. They gave us an 8am court time, and Aaron helpfully demonstrated to the court why he was missing so much school by throwing up all over the courthouse. They really couldn't say too much after that. So we kind of got a mumbled "School is important. Try to get him there more often." and they sent us on our way, with no further action. It probably helps that his grades are consistently excellent, despite the missed classroom time. He just took his reading evaluation last month and topped the grade. Not just best for his class, best score they've ever had for an 8th grader.<br />
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Robbie is chugging along through 11th grade without much commentary from anyone. He's a great kid, and very smart, but we do wish he'd show a little something. Drive? Ambition? He seems very willing to meander gently along through life, enjoying his drawing without pushing to improve it particularly hard, and also without showing any real interest in anything else. It's a bit frustrating.Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-18903838315428686222014-08-02T19:42:00.001-04:002014-08-02T19:42:53.397-04:00Infusion #2Things went much faster this time around, largely because this wasn't a set of appointments wedged into already full-up schedules less than 24 hours ahead of time. We checked in about 1:30, and Rob was called in for his first stop (blood draw) at just a smidge after 2:30, which was his actual appointment time. We got out of that, were called back for the appointment with Dr. Puzanov less than five minutes later, filled out the various forms they make Rob do every time. Spent some time with Dr. Puzanov going over the symptoms from last week, which he opines might actually have been a straight-up reaction to the MPDL drug, rather than an interaction of drug and virus. He also firmly agrees that the increase in tumor size is inflammation and a good sign. Actually much of his visit could be summarized as "Please, please, please don't panic and leave the study! It's fine, I promise!" Rob and I found this pretty funny, because we weren't even considering leaving the study as an option at this point. <br />
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After Puzanov it was time to go up to the infusion clinic. Again, things were much quicker this time, because we were part of the original schedule, rather than wedged in at at the last second. Infusion time is still an hour (plus 15 minutes either side for IV fussing), but we only had to wait an hour before they did the final blood draw and let us go this time. I was also able to run over to the hospital cafeteria and grab some food for both of us, since Rob had been fasting for the first blood draw, and I hadn't had much because it seemed cruel to be munching in front of him if he couldn't eat. The cafeteria is pretty decent as hospital cafeterias go, and actually had decent sushi in their refridgerator case (cooked sushi, I'm not that much of a daredevil!)<br />
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The whole thing finished about 7pm, and we were able to hit the road home in time to get home before midnight. The hour time change here to there is really nice in the morning when heading down, less so coming back home.<br />
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So far no side-effects once again. If last week is a repeating side effect, I guess we'll find out in nine days or so.<br />
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In other news, the kids have now had their first two days of school. Aaron is really liking his classes and teachers so far, and doesn't seem to share any classes with the kids who were pestering him last year (Yay!). Robbie has no complaints, but I've already gotten an e-mail from his math teacher about him sleeping in class. Their friend Samuel will be able to drop by tomorrow and play for the first time in over a year (he lives 2 hours away), so both of them are very excited for this weekend.Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-16699478264312577062014-07-26T23:27:00.001-04:002014-07-26T23:27:53.548-04:00That was the week that wasIt was the last week before school starts again. It was also pretty much a dead loss. Rob caught a virus, and his hyped-up immune system decided to go full nuclear option. Fever, shakes, sweats, sore throat, swollen lymph nodes, inflamed spleen, throwing up - you name the symptom, he had it. This culminated in a nine hour day spent in the ER, because we couldn't keep the hydration up with the fluid loss. They put in 2 1/2 litres of fluid, which is probably the biggest reason for why he felt better, but while he was there they also ran him through a massive series of tests, because they really didn't want to think that this was just some random virus. So there was blood and urine analysis, a mono test, strep test, chest X-ray (in case of pneumonia), CT scan (in case his adrenal gland had ruptured), and then when they discovered his bilirubin was elevated (which made his urine an amazing shade of neon orange), a set of liver function tests.<br />
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The upshot of all this? He had a virus, his immune system freaked out, and then the dehydration spiral got him. They sent him home rehydrated with an anti-nausea pill and some pain-killers (after much back and forth with Vanderbilt about which drugs won't interfere with the trial protocol).<br />
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We did find out two interesting things though.<br />
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#1 - Rob has a benign condition called Gilbert's Syndrome. It apparently causes his liver to produce excess amounts of bilirubin when stressed (E.g. - when he has an infection and is dehydrated). It's otherwise harmless, but does make him a little yellow when he's sick, and occasionally scare ER workers.<br />
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#2 - The CT scan showed that in the three weeks since his last CT, the adrenal tumor has increased from 2.8cm to 3.3cm. The doctor at the ER was very unhappy about this, but when he called in Dr. Rez, our local oncologist, Dr. Rez was very nearly giddy with excitement (for his own personal levels of giddy - he's a really lovely person, but not exactly highly excitable). According to Dr. Rez, it is basically impossible that the tumor could have started growing that fast, which means the tumor is inflamed - which means that Rob's immune system has found it and started attacking it. He's quite adamant that it's the best possible sign, and that we should start seeing shrinkage within the next couple of months. (Please, please, please let him be right!)<br />
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Anyway at this point, Rob is feeling better, if still easily exhausted. The first day of school is Thursday, and Rob's next infusion is Wednesday, which gives us Monday and Tuesday to get all the school supplies, hair cuts, and generally get things ready to go for school. Gonna be a close one!Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-404025500214520262014-07-18T02:02:00.000-04:002014-07-18T02:02:30.080-04:00Where We WaitI was going to call this post "Where We Stand", but honestly our lives are mostly waiting right now, so that seemed more apropos.<br />
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I had a grand time in Okinawa. Shimabuku-sensei and Tokumura-sensei both kicked my butt, if in somewhat metaphorical fashion. I learned a ton about bo, tekko and tetchu, had my front snap kick absolutely dissected, and generally had an awesome but exhausting time at the two dojo. My broken foot is definitely healed - Shimabuku-sensei opened each class with about 15 minutes of running laps of the dojo barefoot, and then followed that up with technique drills, including kicks to focus bags in batches of 50. So if there were anything still wrong with the foot, it would have showed.<br />
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In between the training portions of the trip, we visited the Budokan - a giant dojo/martial arts convention center, Shurijo (Shuri castle), Katsuranjo (Katsuran castle - in ruins), went to Kokusaidori, which is the main Okinawan shopping area and tried several different kinds of foods. Went to Shureido (martial arts equipment store) and bought a gi, dojo bag, and several other random items. Went out to Hamahiga Island. Stayed in a traditional Japanese-style hotel room, complete with tatami mats, futon for sleeping, low table with cushions instead of chairs, and a set of toilet/bathing rooms that has to be seen to be believed.<br />
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Skype is awesome, as Rob and I were able to talk daily, and able to see each other any time he wasn't at work (the work data protocols muck with Skype's video). <br />
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My hard-won Japanese seems to be just enough to get me into trouble. Apparently, while my vocabulary and grammar are still limited, my pronunciation is excellent, leading people to think I speak and understand much more than I do. And since disclaiming any ability is only polite in Japan, no matter how good you are, me saying "No, no! I'm still very bad." is just taken as proper modesty. So people kept exchanging a couple of sentences with me, and then launching in to full-on, full-speed Japanese, and being surprised when I would get lost half a sentence in.<br />
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I'll probably say more about the Okinawa trip in later posts as things occur to me, but for now, onto the Rob update.<br />
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It took a while to finalize everything, but as of last week, Rob is officially in the Vanderbilt study on MPDL3280A/Bevacizumab. He's in the study cohort that receives the PDL-1 drug by itself, rather than the combined medications, which is right where we were hoping he would land. He had the first dose a week ago, and will continue to get doses every third week for the next year, provided the cancer responds in some positive way. If it doesn't then he'll be moved into the dual drug cohort, and if that still doesn't work, it's out of the study and on to conventional treatments.<br />
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In unhappy news, the CT scan they did to finalize his acceptance into the study - the first we've had since March 10, when we first found the tumors - showed about 30% growth in the right adrenal tumor. There are still no other metastases showing, which is good, but 30% over four months is a lot more aggressive than we were hoping for.<br />
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The actual first infusion was fine, though I hope future visits are a little more smoothly planned out. This time we didn't get our go ahead and appointment time until less than twelve hours before we had to leave to get there. Then once we did get there, there was a lot of waiting around between portions, because he'd been wedged in at the last second. Entirely understandable under the circumstances, but I hope it gets more predictable when they have more lead time.<br />
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The day started out with drawing 18 vials of blood for the baseline blood work. Rob seems to have excellent blood chemistry, with the only complaint being that he's mildly anemic - which the 18 vials of blood is hardly going to help, unfortunately. From there we went to the intake interview and final signings of papers - which included the study nurse having to chase the doctor around room to room trying to find him so he could sign the last bit of permission. While she did this, Rob filled out the various "How are you feeling today?" forms, which he'll have to do with each visit, and then we were off to the infusion.<br />
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The infusion takes about 90 minutes all-told, with about an hour of the drug running, plus set-up time and time at the end. Then we have to hang around for another two hours, while the nurses stop by and check things like pulse and blood pressure every 20 minutes or so. Fortunately, he's allowed to eat and snacks are available, and we're never short on reading material. After the infusion they draw another two vials to check for drug levels in his blood, and then after the 2 hours are up, we're allowed to go. This first time, we finished right at five, so we went out to dinner first rather than fight Nashville traffic running north (one advantage to having lived in Nashville before, we know when and where traffic is likely to be bad).<br />
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Future visits, we can skip the intake interview and chasing around for signatures, plus they will apparently gradually increase the rate of the infusion if he tolerates it well (which he did this first time), so we should be able to get through the whole process a little faster. With any luck, we should be able to see the kids off to school, hit the road, make Vanderbilt by about 11am, and be home again by about 10pm. A long day, but manageable.<br />
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Oh - and the next infusion date is also the first day of school - so I really hope they can schedule us in such that we can get the kids off to their respective buses. It would really suck to have to leave the boys to see themselves off for the first day of school. Bad enough that we'll be coming home just about in time to say "Good night".<br />
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No noticeable drug side effects thus far. Rob was pretty tired the next day, but not in any way that was distinguishable from the normal tired you'd expect from driving six hours and having seven hours of hospital time in one day. The only day-to-day discomfort he's having at this point is a chronic upper-backache, which seems to be nothing directly cancer related, but rather a combination of his horrible posture, and a tendency to have tension backaches rather than tension headaches. So far we're keeping it down to a dull roar with Tylenol, massage, and Tiger's Balm.<br />
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And now we wait. We have another infusion in two weeks, and then a repeat CT scan the visit after that. Until then, all we can do is be as healthy as we can, and hope that all of this is doing some good.Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-71059398713206096042014-06-08T01:19:00.000-04:002014-06-08T01:19:17.062-04:00Want/Don't WantI leave for Okinawa in the morning.<br />
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I've dreamed about this trip for literally years. I've worked on my Japanese, worked on my karate, spent lot of time, money, and energy to even be able to go on this trip. I'm not likely to get the opportunity again, and I don't want to miss it.<br />
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But now I'm terribly torn about going.<br />
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I know it will be all right. There isn't anything major medical happening for Rob in the next 12 days. He has one CT scan, and some papers to sign - that's it. We have Skype, so we'll be keeping in close touch. He wants me to go - has insisted repeatedly that I not cancel out. And yet, I don't want to go away - to walk off and leave him right now.<br />
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I guess, since I am going, that I had better get everything out of this trip I can. Bad enough to go right now, worse to leave and have a bad trip because I can't get my head to come with me. To both miss the point of the trip, and be apart from Rob would be a crying shame.<br />
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Deep breath. I'll post when I'm home again. See you all June 20th.Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-75042198628330766342014-06-06T01:59:00.000-04:002014-06-06T01:59:20.537-04:00I Pronounce It "Eye-gore"Well, not actually. The doctor's name down in Vanderbilt is Igor, pronounced the usual way. We're still getting a kick out of Rob potentially getting experimented on by an Igor, though.<br />
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The trip to Vandy was very good for our psyches. Firstly, Rob has been declared an excellent candidate for the trial. He needs to get a new CT scan, but unless it shows regression, he's in. If he does show regression, we don't want to mess with it anyway. Igor (actually Dr. Puzanov, but it's too much fun calling him Igor) was very informative, and was able to reassure us on what would happen if he ended up in the control group, and how they dealt with patients who weren't responding well to the treatment.<br />
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The trial has three branches: One gets the trial drug (MPDL4280A, or PD-1 for shorthand) alone. One gets PD-1 combined with bevacizumab, which is a TKI, or anti-angiogenic drug. One gets Sutent alone - which is the most commonly used of the TKIs in current therapy. Or in other words, branches A&B are the experimental groups, and C is the control. Thankfully these days cancer trials are run vs. the standard of care, rather than vs. a placebo.<br />
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Additionally, if the patient doesn't respond to the Sutent, they can be moved into the A group, since at that point they would be stopping Sutent therapy under the standard of care anyway. As to another concern of ours - that TKI therapy can inhibit later IL2 therapy by causing heart toxicity, Dr. P said that they had noted that, and had developed an in-house protocol for doing IL2 specifically for patients coming off of TKIs that has been working well for them.<br />
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So we came home with a pile of paperwork for Rob to read through and sign, and he should be getting his repeat CT within the next week or so. Entry into the trial won't be before I get back from Okinawa at the earliest.<br />
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The other exciting bit of news was from Dr. R - our local guy. He spent the weekend at the ASOCO annual meeting, and went to the presentation of results from the first trials of PD-1. Results are incredibly promising - 26% of patients with durable remission. Keep in mind, the durable remission numbers for IL2 are something like 4%, with another 15-20% getting a durable partial remission. PD-1 trials for melanoma were also presented, and apparently it's the first drug to show real life extension with advanced melanoma cases. He thinks that with numbers like those, it should be FDA approved for renal cell carcinoma and melanoma before the end of 2015. Knowing the FDA, I'm a little more dubious, but since it's already approved for some other cancers, it's possible.<br />
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In other random good bits, Dr. P commented that Rob's expected untreated lifespan wasn't "average of three years", which had been told to us a couple of times as the usual for stage IV RCC, but that given his blood markers and the nature of the spread, he would say "minimum of three years" if untreated. Which sounds a heck of a lot better to us. Particularly the "if untreated" part, since we're hardly going to leave this untreated. Not as good as "durable remission", but still a more upbeat take.<br />
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Three days to Okinawa! Packing! Last day of school! - busy, busy the rest of the week.Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-81809146477072649512014-06-02T16:35:00.000-04:002014-06-02T16:35:01.792-04:00Plans for the weekToday is/was Rob's first full day back at work. He's not quite at the end of the day yet, but seems to be chugging along with no more complaint than a slight tension headache. Go Rob!<br />
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Tomorrow is also work, but he'll be cutting out a little early for his next appointment with the urologist. We don't expect any new information from this one, just a recheck to make sure everything is continuing to heal post-surgically. Also, Dr. P is supposed to be asking his friends at NIH about any other interesting studies being done with RCC in case the ones we're already pursuing don't pan out.<br />
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Wednesday we head out for Vanderbilt so they can evaluate Rob. We've gone back and forth with them a couple of times on this, where we thought we weren't going, because the study was closed, but then they called back and said we should come ahead. So we're less confident than before about Rob getting into the study, but it's apparently still possible. Dr. Rez is also looking into University of Chicago, as there is apparently another study recruiting patients there.<br />
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The more common name for the study drug we're looking at here appears to be PD-1 or PDL-1, rather than PLN1 - I'm not sure if that's me mishearing Dr. Rez, or an alternate name for the drug. The ASCO meeting presentation on it was supposed to be today. I'm hoping that one or another of the doctors we'll be seeing this week can tell us something of those results.<br />
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This is also the boys' last week of school (at least until they start up again on July 31 -short summer). They'll be on their own a lot next week, since Rob will be back at work, and I'll be in Okinawa, but the week after their Uncle Doug is coming (Thanks Doug!), which should help a lot. Fortunately at 15 and 13, they're capable of looking out for themselves during the day pretty well. They're both reacting to Rob's cancer in their own way - Robbie in the very helpful mode of suddenly taking his homework and responsibilities much more seriously. Actually, it's so helpful that I have to keep reminding myself that it is a stress response, and I need to give him attention and support too. Aaron seems to be reacting through his digestion, as always. He's been having a lot of morning nausea and vomiting, and then this morning, when it seemed like we had that under some control, he started having esophageal spasms - basically nasty cramping chest pains that would double him over. Fortunately they're basically benign - really uncomfortable but nothing that's doing harm. Suggested treatment from the pediatrician was ibuprofen and either cold or warm drinks - whichever better soothed the spasms down (cold seems to be doing the trick, so Brazilian frozen limeade has been most of his calorie consumption today, as solid food doesn't go down well unless really thoroughly chewed to a pulp).<br />
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For the curious: 5 T lime juice, 5 T sugar, 1 c. light coconut milk, 2 c. crushed ice: stick in a blender until smooth - serves 2.<br />
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Also this week, I need to set up stuff for Art on the Parish Green, which will happen while I'm gone. Rob will be manning the booth, so I need to set up everything I can ahead of time. Plus packing, getting some Yen, and all the other stuff that goes along with an overseas trip. Busy, busy week.Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com2tag:blogger.com,1999:blog-19041374.post-9679854035389628952014-05-27T13:34:00.004-04:002014-05-27T13:34:33.853-04:00Next stepsWe saw Dr. Rez - our local oncologist today, and it looks like we have another modification of plans - at least a potential one. He is in contact with the doctor running trials of PLN1 - a chemotherapy treatment which is in trial at Vanderbilt. Dr. Rez thinks Rob may be a good candidate for the trials, and would like us to trek down to Vanderbilt so they can have a look. Currently we're waiting on the call from his office to tell us when they can fit us in. I'm really hoping it's within the next two weeks, because otherwise we have some tough decisions to make about whether he should go on his own, or wait another nearly three weeks to see them.<br />
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Not a lot of data available on PLN1 for renal cell carcinoma right now, but there's supposed to be a presentation at the American Society of Clinical Oncologists annual meeting next week, and the buzz is that it's very promising.<br />
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Essentially, getting IL2 treatment would remove Rob as a candidate for the clinical trial, but doing PLN1 should leave IL2 open as a possible future treatment later - so in the general principle of not cutting off options before we have to, it makes sense to look at this first.<br />
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The plan of new CT scans and not doing anything until we look again in 12 weeks to get a baseline of tumor behavior remains intact, so even if Rob ends up in the PLN1 trial, it isn't likely to be for a few months. We should have a good deal more information about this particular treatment avenue after next week once the data are actually public.<br />
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Oh - and for anyone interested in the sort of oddball progression Rob is having, the keyword for searching turns out to be 'synchronous' - as in "Renal Cancer Synchronous Adrenal Metastases". There are apparently a whole 17 other previously recorded cases. (Thanks to my friend L for figuring that one out.)Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-2175737585375525562014-05-24T15:51:00.000-04:002014-05-24T15:51:14.028-04:00While we were making other plans...Things have changed a lot since the last time I posted here. I will still be going to Okinawa in about 3 weeks, but that's about all that's still the same.<br />
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Over the time I've had Perpetual Beginner it's been a personal blog, a karate blog and a writing blog, often all three at once. And for a while, about four years back, it was a cancer blog. Or at least a caretaker's blog, while my father-in-law was fighting (and losing) his battle with common bile duct cancer.<br />
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Now it gets to be a cancer/caretaker's blog again. My husband, Rob, had a CT in February as a routine follow up to suspected kidney stone. Instead they found a large mass on his left kidney, and smaller bilaterally symmetrical masses on his adrenal glands. The remainder of February and all of March was running around getting every scan known to man, trying to sort out if the adrenal masses were related to the kidney mass, or something separate, like congenital adenomas - which would be benign. Those tests, up to and including the biopsy on the right adrenal came back inconclusive - nobody could tell us if either adrenal was cancerous or not.<br />
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So on April 17, Rob had a radical nephrectomy, removing the left kidney and adrenal gland and sending both out to be sectioned. The verdict came back clear cell renal carcinoma (RCC) in both the kidney and the adrenal gland. Which means it is very likely that the right adrenal is also RCC, but again, we just don't know. Upshot - stage four metastatic kidney cancer.<br />
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So now we are trying to decide what to do. We have been to both our primary oncologist, and to two outside specialists to review our options and see if anyone had a clearer idea of what a good course of action would be. The only thing all three oncologists agree on is that RCC is a bugger - unpredictable and illogical, and that no one can give us any certain or even likely prognosis. (Our first RCC specialist consultant described it as "An angry teenager on a Friday night with car keys.") We could choose to do nothing, and have him live a decade or more anyway. We could treat with everything in the arsenal and still have only a few years (or less). The odds shift, but the odds don't tell you the outcome of any given case.<br />
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On Tuesday we go back to Dr. R - our primary oncologist, and decide on our actual course of action - well, most likely we get a whole new set of scans, and then a choice of actions. The major possibilities at the moment are: 1) Wait, with regular rescanning and see if the daughter tumor grows, shrinks, or stays the same. 2) Treat with a TKI (pazopanib or Sutent), with regular rescans. 3) Treat with IL2 (Interleukin 2) or 4) surgically remove the right adrenal, follow with 1, 2, or 3.<br />
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Dr. R seems to lean toward 2, and we were agreeing with him until the second consult (Dr. Logan at Indiana University). His thought were that as the mother tumor was so much of the tumor load, it was worth going with 1, until we had a clear idea of how the daughter tumor was going to behave. If it does grow, or worse metastasize, then he recommended going to IL2 as a first line treatment. Apparently there's a recent study that suggests that it is safer to go from IL2 treatments to TKI's than to reverse that and go from TKI's to IL2. Also, there are some cases, not a lot, but some, where removing the mother tumor causes the daughters to cease growing or even shrink, and it's worth watching a while to see if Rob might be fortunate enough to fall into that category.<br />
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There are a lot of other considerations flying about as well, which I may talk about in other posts, but suffice to say it's a hard decision that by it's nature is being made on way too little knowledge. There's a lot of uncertainty and fear flying about, and no particular end in sight. This is going to be a long haul (unless we're very unlucky indeed). I'll be posting the extended updates here (short bits of info go on Facebook), for those of you who want the big, messy version of things.<br />
<br />
Welcome to the new, more terrified blog of Cindy's life. I hope and trust it won't be all bad/sad news all the time, but it's probably going to be a bumpy ride.Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com1tag:blogger.com,1999:blog-19041374.post-58972120714019644362014-01-08T01:36:00.001-05:002014-01-08T01:36:04.518-05:00Okinawa Ho!We have dates! It looks like Sensei and I, and a few others, will be heading to Okinawa for the middle part of June. We have tickets and everything! Time to break out the Japanese big time! (I haven't let it completely lapse, but I haven't been hitting it as hard as I could by any means.)<br />
<br />
I'm so excited about this I can hardly contain myself - everything comes out in exclamation points! Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com2tag:blogger.com,1999:blog-19041374.post-53347583180252581812013-04-08T01:38:00.002-04:002013-04-08T01:38:35.487-04:00Book Review: Shadow of the Dragon DuologyThe <i>Shadow of the Dragon</i> by Kate O'Hearn is a YA duology recently sent to my sons by a friend. In not atypical fashion, I ended up reading them before anyone else in the family, and since I've been thinking about them a great deal since I read them, I thought I'd write a review and put some of those thoughts down.<br />
<br />
I have two initial reactions to this pair of books. Firstly, they're a fast and reasonably fun read, and I'm quite sure my sons will like them. Secondly, only rarely have I read a pair of books that have so made my editor's reflexes itch. I badly want to enter the books on my computer and try to <i>fix them</i>. Which given that I'm acutely aware of my lack of experience and expertise as an editor (and particularly as an editor of books), says something. For a story to make me itch so badly to get my hands on it means that the problems are egregious enough to override my self-doubt.<br />
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(I'm not going to particularly try to avoid spoilers, so be wary if you hate such things.) The books are a fairly standard YA adventure plot. A pair of sisters, 12-year-old Kira and 8-year-old Elspeth are raised in a kingdom that takes sexism to new and inspired heights. Girls may not be taught to read or write. They must be engaged before age 12 and married before age 13. They may not behave or dress in any way like boys. They may not approach the royal castle or the king. And they absolutely must never have anything to do with dragons. A violation of any of these rules is punishable by death. Dealing with dragons is punished with slow torture before the execution.<br />
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If you guessed that Kira and Elspeth will end up dressing like boys, flying on dragons, and toppling the oppressive king, congratulations! You have grasped the essence of most YA adventure stories.<br />
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Oddly enough, I don't particularly object to the fact that I could guess the ending of the series with a high degree of accuracy before we got past chapter one. With a lot of adventure books, and especially YA ones, the novelty of the story is almost entirely in the details of the journey, not with where you're going. And it's exactly in those details that SotD makes me itch.<br />
<br />
A big component of that itching is timing. By the time Kira and Elspeth are born, the girl-specific laws (called the First Laws) have been in place for generations. It beggars belief that Kira, whose mother and grandmother and great-grandmother were all married off in arranged marriages by age 12, who has been raised by loyal and dutiful parents, who would never dream of violating the laws and endangering their daughters, Kira, who has known since the time she could talk that this is coming, would stomp around arguing with her parents because they've found a nice boy for her to marry, saying that she doesn't wish to marry at all, and expounding on her desire to be a dragon knight. She might have those thoughts, or even be somewhat rebellious, but she's being outright stupid in a really unbelievable way. The timing is off - nothing has yet happened in Kira's life that would push her into such a huge rebellion against the parents she clearly loves. Once her family is dragged off, parents and brother conscripted for the King's war, and her middle sister sent to prison for being an unmarried girl, and Kira and Elspeth are hunted fugitives? Yeah, once that's happened, I can believe almost anything Kira might do, but before that? There's just no reason for Kira's outright rebellion. It seems to exist purely as a chance to drop in the explanation of First Law and perhaps to let the book start in an exciting moment that gives Kira an excuse to stomp out of the house and thereby miss the knights coming to burn down her house and drag off her and her family.<br />
<br />
(Internal musing - I would probably have had Kira off by herself daydreaming about the Rogue (the feral dragon near her home), lamenting internally the unjust laws that meant she could never work with dragons herself, or even plotting how perhaps she could approach the Rogue 'by accident', and then coming home to the arrival of the king's knights, though I'm sure there are other ways this could be dealt with as well.)<br />
<br />
I also object to idiot plots - no not plots that are stupid, but rather plots that require the characters to be idiots for them to work. The whole situation of SotD is kicked off with a king who is highly fortunate to have survived his own idiocy at all. A wizard comes forth with a prophecy of a young girl with a dragon who will topple the monarchy, and the king responds immediately with laws guaranteed to piss off not only every young girl in the country, but every relative near or distant that cares about them at all. By rights, the king who instituted First Law should have been facing a rebellion or repeated assassination attempts pretty much immediately, not had the whole country go meekly along for several hundred years. He doesn't make any attempt to justify them (only the king and the wizard know about the prophecy), or to put them in place gradually. He just decrees, and WHAM! suddenly women are effectively chattel without so much as a whimper.<br />
<br />
My last large objection is to the major Deus ex Machina character, in the form of a dyslexic wizard, Paradon. I liked the concept - he can't read, and much like the words on the paper, his spells end up jumbled, with rather random results. This could be comic, tragic, both, a major complicating factor, or nearly anything within the book. Instead, all the things that go wrong, pretty much end up driving the plot exactly where it needs to go in a fashion that gets really annoying. Everything was just a little to convenient - not necessarily for the characters, but rather for the author - and the feel of the book suffered for it. Even the attempt at a major plot twist at the end couldn't shake that feeling that with Paradon on hand, it was all going to go just so, somehow. It felt like an adventure novel written by a devout Calvinist - it's all predestined, and we're just hanging around waiting for the inevitable to unfold.<br />
<br />
As you might guess by this point, I really can't recommend the books. I don't hate them, and as previously noted, I suspect the kids will enjoy them, but there are just too many issues for a more experienced reader to overlook. <br />
<br />
<br />Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-3356799629468568472013-03-17T20:20:00.000-04:002013-03-17T20:20:05.136-04:00The Long Curse is OverFor the first time in history, I have successfully been recorded singing. It's not the cleanest, or the best quality, but it's there. Now I just have to figure out how to deal with an .mp4 file, and I'll try to post it.<br />
<br />
I will note, recording me has been tried before. Something has always gone wrong, ranging from having a tape recorder switch to double speed for no discernable reason, to having the audio engineer forget to turn off the mike in the back of the room while recording off the stage - and then eat his lunch next to it (the audio? CRUNCH, crunch, crunch, crunch. Pause. CRUNCH, crunch, crunch, crunch. It sounded like he was eating carrot sticks.)<br />
<br />
Unfortunately, my good sport of a friend who did the recording, using my iPhone, didn't manage to catch the second, longer piece I did, but she did catch all but the first couple of seconds of Bist du bie mir (Bach). I hope I can figure out how to at least upload it to here or Facebook (or both) soon, and possibly how to edit it to clean up some gobbledy-gook at the end, where she was trying to record the second piece and it didn't quite work.Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-38341201314706801602012-12-02T02:04:00.002-05:002012-12-02T02:04:46.385-05:00Post-NaNo GoalsAlrighty - so that was a month. Overall, I'm really tickled with my NaNoWriMo results this year. I've ended up with a viable first draft novel; something that not only doesn't happen every time I do NaNo, but doesn't even happen every time I <i>win</i> NaNo (I.e. sometimes I end up with 50,000 words that still don't make a workable story).<br />
<br />
This time I have a story. I have not only a plot, but at least two or three viable subplots, and a nice major twist at the end - which, entertainingly enough was <i>not</i> the major twist I had planned. The twist I had planned is still part of the universe, but there was no good place within this book to put it, so I think it's getting moved to book two. The major twist for this novel didn't come to me until I was literally writing the conversation in which it appears. My two major male characters have a conversation right after the big final battle and in that conversation one of them dropped this bomb that I hadn't seen coming, but which makes total sense in context of both book and character. The ironic thing was that in the first iteration of this book, which I wrote several years ago, and which got stalled out a bit beyond the halfway point, this is the same character responsible for that stalling out. Very opinionated character there - if he doesn't agree with what's going on, he effectively refuses to do anything, but if things are going well, he helps push them along nicely. Well, maybe not nicely, Radik is not a nice sort of person really. But he's fun to write, and I think this second iteration of the book is a significantly better book than the first version would have been.<br />
<br />
For the next couple of months, my writing goals will be to finish filling the plot holes and straighten out the currently somewhat wonky timeline in the first draft, so I can send it out to beta readers and with luck, get some decent feedback. I'm planning on putting 500-1000 new words per day on the draft, but probably not much more than that, since the structure/timeline issues need as much work as the filling in, and that's not likely to be adding much verbage.<br />
<br />
For other goals this month, I have a lot of house cleaning to do, since things suffered mightily during NaNo, especially the last week, when post-Thanksgiving left me with 3000+ words/day to be written. Plus there's a lot of singing for church coming up. I don't know if I'll get anything soloish for Christmas Eve this year (which would be a disappointment, since I really, really would like something), but I can't complain too much if I don't, since the reason would likely be the sheer amount of solo singing I'm doing in Advent. There are enough people capable of doing solo work in this church that if I do four pieces in five weeks, it's likely to cause some upset, and that's understandable. It is a bit unfortunate in that it seems to be a reversion to an improved version of my problem under the last choir director, which was that he gave me solo work not because he liked my singing and wanted me to do solos, but because he would want certain things done, and I would be the last singer standing - the only one with the technical chops to do what he wanted to do. This new director seems to have more regard for me as a singer, but there's still an extent to which I seem to be getting the solo pieces because I'm the one who can learn a technical piece fast enough and reliably enough to do it on short notice, and he seems to fly by the seat of his pants a lot. In many ways I think I'd feel a lot happier doing fewer solos that were done more deliberately, and more because they suit me, suit the occasion, and are beautiful, than because "we need something for this Sunday, and the choir isn't ready. Cindy can you sing X?"<br />
<br />
Next Sunday should be special, though. We'll be doing a piece for choir, bells, solo flute (Robbie!!!!) and soprano (me!). It will feel wonderful to get to do a piece for church with Robbie and I working together. He and I have both learned our parts separately. This week we need to start working together at home, so that by Wed. rehearsal it won't throw him to suddenly have the other parts there. Plus our director tends to not allow for a lot of rehearsal time, so the more prepared we are ahead of time, the better.<br />
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Onward!Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-59517476224981179662012-11-30T06:28:00.003-05:002012-11-30T06:29:34.618-05:00And now I get my life back!<img alt="Winner badge 180x180" class="size-full wp-image-5500 aligncenter" height="180" src="http://files.content.lettersandlight.org/nano-2012/files/2012/11/Winner-180x180.jpg" title="Winner 180x180" width="180" />Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-77346688337635440742012-11-04T23:19:00.000-05:002012-11-04T23:19:04.171-05:00Lennox Legacy and NaNo Begins!Well, NaNoWriMo seems to be off to a good start. I'm up over 5000 words despite spending the weekend up in Akron, OH. Plus, after the first scene, the re-created Flayed Queen seems to be taking off in a significantly different direction than the first one, which is good in two ways. First, it means I'm not limiting myself to trying to imitate something I did before closely, which would be very limiting. Second, my first edition of FQ got stuck at about the three-quarter mark with plotting issues involving an extremely uncooperative character.<br />
<br />
This time, I seem to be concentrating on different aspects of the plot, and I have pre-warning of my stubborn survivalist, so I have hopes of a clean run to the end. I even got in about five hand-written pages while I was on the road, which kept me on track for word count. Wish me luck as I plow into the middle sections in the next few days.<br />
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As I do at the start of every November, I spent this weekend up at the Lennox Legacy tournament. It's run by Sensei Heidi Gauntner, who is one of the most experienced tournament organizers in the Isshinryu world - by now she runs an excellent smooth tournament - always worth going to. This year was a little different. Sensei Gauntner will be running the IWKA Isshinryu World Tournament in 2013, and she is starting now to try to make things run smoothly. Toward this end, she is working with a few of the most highly ranked people in the IWKA (Hanshi Duessel and Hanshi Markum) to create a new set of rules for judges within the IWKA. The new rules are intended to encourage more clean, proper technique and more consistent judging both within and across rings.<br />
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Since revealing the new rules at the giant World Tournament would be an invitation to disaster, Sensei Gauntner held a seminar on Friday night for all the black belts who could make it, to explain, discuss and illustrate the new rules. The center judges at the Lennox Legacy were then chosen from those who had been at the seminar, and supposedly disseminated to the corner judges.<br />
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The seminar was really interesting, and having been over them thoroughly now, I like most of the new rules. There are bits that need to be better explained, or more explicitly stated, but it's a much better set of guidelines than we've ever had to go by before. Applying them the next day proved to be a lot more difficult, as a number of the judges, including ones who were at the seminar, and absolutely should have known better, were only applying the new standards haphazardly. My particular center judge was mostly applying the new rules, but failed to explain them to her corners at all, and on a couple of occasions ignored them for no apparent good reason. I gather some of the other judges were uneven in application, probably due to confusion or disagreement with some of the standards. In general, though, the new standards seemed to hold up well. The new kata scoring system in particular seemed to work much more smoothly. I suspect that the new rules will be in effect in pretty similar form to this by the World Tournament, and that they will work pretty well, despite the inevitable pain and grousing of trying to get this kind of change through a bunch of people as inherently conservative (in the non-political sense) as senior black belts.<br />
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I was intending to compete this year, but got drafted by the scorekeepers instead. There were a good number of competitors, but a real shortage of support people (making Heidi and Marybeth's superb organizational skills a real life-saver), so I opted to go where I was needed. Scorekeeping turned out to be both informative and a lot of fun (my partner was great), and I got to see a lot more of what was going on than I usually do. I do want to compete at the World Tournament, though, so if Marybeth wants to draft me again, she's going to have to wait until the senior women blackbelt ring finishes.<br />
<br />
Summary - Lennox Legacy is a great tournament, a lot of fun, and you should go (it's open, not Isshinryu only).<br />
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For this week - I'm on a writing/cleaning challenge kick. I'm hoping to spend the next few days alternating between writing NaNo and cleaning my disaster of a house. With any luck you should see a before/after post or some variant of one later this week. In the meanwhile, wish me luck - I take Robbie (who is needle phobic) in for a blood draw in the morning.Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-25667964848750487532012-10-22T18:29:00.002-04:002012-10-22T18:29:32.360-04:00NaNoWriMo KickOff PartyDespite having been here for eight years, and doing NaNo all but one of them, I've never been to any of the local NaNo events. First off, they're generally across the river, making them a fair drive to get too, and secondly, they are invariably weekends and evenings, which are usually spoken for. This time, though, I kicked free the couple hours of a Sunday afternoon and went to the kick-off party. It was pretty good sized - thirty-plus people by my guesstimate - and a lot of fun. I met about five people of the thirty, two of whom are already published authors, if of small-press, or e-book only books. We had lunch, wrote a story together (one line from each person), had a dare draw, and other such things.<br />
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Eight days and counting to NaNo! Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-64753715088816754352012-10-16T18:49:00.000-04:002012-10-16T18:49:09.005-04:00NaNoWriMo - Ten Point Novel Template<!--[if gte mso 9]><xml>
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Here's my completed template (the template itself comes from Lynn Viehl at paperbackwriter) for the novel I'm intending to write for this year's NaNoWriMo challenge. It should be noted that I did a successful NaNo with this same novel several years back - except that a) I didn't do any pre-planning, and got bolluxed and stuck about halfway through the plot, and b) That file, along with several others, was lost completely when my hard drive crashed about two years ago. I really liked my characters and the basic idea of the story, though, so I thought I'd give it another shot with a bit more focus, and see if I could get an entire first draft down instead of 50,000 meandering words with some neat bits.</div>
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I've also done a lot of thinking about the world and character in the intervening years, and have the basic set-up for novel #2 (Dragon) pretty clear in my head, if not the resolution or plot twists yet. Book #3 (Dominion) is vaguer, which is funny as heck, because this whole series stems from a scene at the beginning of book 3, which then led me to start working forward and backward with the character in that scene (How did she get here? Why are things like this? What happens next?) I'm amused that the book idea that started the whole thing is still nebulous as hell while the two prequels are pretty clear in my head.</div>
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Note to readers: Please, please, feel free to critique this - offer ideas, commentary, or anything else you please. The more thinking I do about this at this stage of the game, the smoother November is going to be, and the more likely that I'll end up with a workable finished product.</div>
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The Flayed Queen – Book One: Demon</div>
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Ten Point Plot Template:</div>
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Who: Davila – novice mage</div>
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<span style="mso-spacerun: yes;"> </span>Radik –
journeyman mage, demon hunter</div>
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<span style="mso-spacerun: yes;"> </span>Demon –
various names</div>
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What:<span style="mso-spacerun: yes;"> </span>Radik and
Davila must prevent the demon from opening the Portal to Other Worlds, or when
that fails, reseal it.</div>
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When/Where: The small country of Inviko, approximately 500
years after the demon wars (when the demon arrived), and about 1500 years after
humans arrived.</div>
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Why:<span style="mso-spacerun: yes;"> </span>Demon life is
incompatible with human life. Wounds they cause do not heal, and their general
presence causes instability and panic. An invasion would likely eradicate
humans from the planet.</div>
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Primary plot line: Davila knows nothing of magic, and Radik
must teach her what she needs to know while they try to track the demon cross
country. </div>
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Subplot #1:<span style="mso-spacerun: yes;"> </span>As one of
a pair of male/female fraternal twins, Davila and her twin Daav automatically
become heirs to the regnants if she becomes a functioning mage.</div>
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Subplot #2:<span style="mso-spacerun: yes;"> </span>The demon
subverts the nuva-regnant (the non-mage ruling twin) with a promise to help her
wrest mage powers from her brother, who is distracted and ineffectual as a
leader, in return for her help to open the Portal “so it can return home.”</div>
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Subplot #3: <span style="mso-spacerun: yes;"> </span>The
magus-regnant is dabbling in forbidden magic trying to get his wife to conceive.</div>
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Major Twist: Humans are no more native to this land than the
demons are. In fact they were the successful demon invasion of their own era,
having adapted to this world over the last 1500 years. (I.e. 1500 years ago,
they were as inimical to life on this world as current demons are.) Demons may
even be human as they were then – nobody knows.</div>
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Resolution:<span style="mso-spacerun: yes;"> </span>The demon
succeeds in opening the Portal, but Davila and Radik manage to seal it again
before more than a handful come through. Daav, warned by Davila, manages to get
enough of the army there to kill those who come through. Davila is terribly
mauled, and as of the end, her survival is still in question.</div>
Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-43690753568052484732012-10-16T00:08:00.001-04:002012-10-16T00:08:06.862-04:00Writing and Deliberate PracticeAs we head into NaNoWriMo season, I find myself once again trying to figure out this writing as a possible career stuff. Frankly, while other things, as always, figure in, I just don't feel like I've gotten to be a good enough, steady enough writer to make a career right this moment. I can write decently. I can tell a good story. But I'm not a consistent writer, nor an outstanding one.<br />
<br />
Unsurprisingly, the key to becoming a consistent, excellent writer is practice. Not just any practice, but dedicated, directed practice. Practice on things that I need to improve. Practice with feedback, so that I can tell what I need to improve. And lots of it.<br />
<br />
And that's where things get a little tricky. Because quality feedback is hard to come by. Submitting stories and novels gets one sort of feedback, but generally until you clear the minimum bar of acceptability, you don't get feedback beyond "This isn't for us." You don't know if an editor liked your plot, but the characterization was wooden until the story is good enough to warrant more than a form letter rejection. For people (like me) who tend to think and write in novel-length plots, the rate of feedback to effort from just writing and submitting is huge, and not particularly helpful.<br />
<br />
So, if I want to become the writer I think I can become, I need to figure out how to do a few things. I need to find ways to work on specific aspects of novel craft during daily writing - so that my daily writing becomes working for improvement, not just words flung onto computer screen. I need to find quality feedback for those same aspects of my writing, so that I have some measure for improvement. And I need to leap the Dunning-Kruger gap, and find ways to learn what it is I don't know about novel writing, so I can set about learning it. Right now, an awful lot of what I "know" about structure, pacing, and the technical scaffolding of a novel is subconscious - something gleaned by the immense amounts of reading I've done my whole life. It gives me a pretty good feel for when something is working right, but few ideas of what's going wrong when something isn't working, and even fewer ideas of how to fix it. That's all knowledge that needs to become conscious and explicit if I'm to become consistently better at this writing stuff.<br />
<br />
I can crank out a B+ college paper pretty much as fast as I can lay the words down on the page, but that's not the skills I need now, nor the kind of writing I want to do. Time to set out and find what else I need to do.<br />
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Expect to see a lot of speculation, exploration of these things, particularly through NaNoWriMo, as I try to finish the re-boot of The Flayed Queen (discussion of that later), because by the time NaNo is over, I want to have some plan of action in place, so that I don't lapse into post-novel ennui. If you haven't run into NaNoWriMo, go look it up. It's a lot of fun, even if you don't want to become a writer forever.Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-29898983810748925342012-10-12T15:47:00.002-04:002012-10-12T15:47:40.613-04:00That Japanese StuffIn the process of focusing my efforts, I'm running into things that are maybes - things that could arguably help my main goals, but aren't indispensable. The biggest of these by current time and effort is my push to learn Japanese. I've been working on it for close to a year now, at varying levels of commitment, and am at the verge between beginning and intermediate student by most measures.<br />
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Now, learning Japanese is a lot of fun, but actually learning a language in some useable form takes daily commitment, and it's link to my three main purposes is not so clear. It doesn't particularly help me be a better wife or mother (or at least any more than any other satisfying intellectual pursuit would). It helps me as a writer only in as much as learning more about how languages work in general can make me more aware of how I use my English.<br />
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The karate front is where the closest connection of Japanese to my purposes is (duh, right?). It's perfectly possible to be a serious, committed karate student without ever learning more Japanese than required by the dojo. However, ours is an Okinawan art, our Osensei speaks Japanese natively and English only poorly, and knowing what the words of Japanese used to describe our art actually mean can definitely affect how you see them. Just for one example "uke" is generally translated as "block", but comes much closer in meaning to "reception". Last, and most direct, I'm hoping to make a training trip to study with Master Shimabuku in 2014. If I can understand him directly, if I'm not tied at the hip to a translator, if I can carry on my own conversation and ask my own questions, I suspect I will get a lot more out of the trip. Not to mention, I suspect strongly that learning Japanese will help me go on the trip in the first place, as the Sensei organizing the trip has many, many applicants, and will probably be weeding them out on various criteria.<br />
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So I think for now, the Japanese will stay. I will be paying close attention to how much time I spend on it, though. The language podcasts in the car can stay - not otherwise used time right now. My writing practice is mostly on the bus while chaperoning the marching band right now (other than 20 minutes each night on specific kanji). As a major plus, if I can get my reading to a middling fluent level, I can practice the Japanese by reading things relevant to either writing (there are a lot of phenomenal Japanese writers) or karate, which will combine.<br />
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Thoughts? Am I deluding myself because I like learning Japanese and don't want to give it up? Or is this a reasonable decision vis-a-vis my focusing efforts?Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-42012576828871087292012-10-11T22:00:00.000-04:002012-10-12T15:49:24.380-04:00A Change in Philosophy - or the Return of the BloggerSo - I've obviously been away from blogging for quite some time. Past the point where an "Oops!" is the appropriate return post. So I'm viewing this as effectively the start of a new blog with the same name. And, hopefully, a few of the same readers returning, which would be lovely.<br />
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Nothing particularly happened to cause the long blog hiatus, just my life as my life usually is - and therein lies the problem, and the titular change of philosophy. My sub-title "Life is too short to specialize." is seeming less and less appropriate, and more and more like a problem. My life is full of too much. A cousin of mine aptly called me a skills collector, but I think I've hit the point where amassing more "good enough" skills, or even more "pretty darned good" skills isn't going to do anything for me. I need to focus on making some skills "so good they can't ignore me" (Steve Martin), and that requires more focus.<br />
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I've been reading through <a href="http://calnewport.com/">Cal Newport's blog</a> (which I highly recommend btw), and discovering that much of what he writes about learning, careers and passion seems to apply to me in spades. The biggest and most stunning was the idea that following your passion is a trap for many people. If you're convinced that you need to find and follow your passion, it can lead to being a dilettante, always skipping from one thing to another, hoping that this one will be your one true passion. But what if you don't have One True Passion? I mean, I don't believe in the One True Soul Mate, but rather that there are many people out there that I could have satisfying, meaningful relationships with. Which means that a bump in the relationship road doesn't mean that I mistakenly married the wrong person, but rather that relationships have bumps sometimes. Even a loss of passion isn't a death knell, but rather a warning flare that the relationship needs attention.<br />
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What if careers work the same way?
When I change focus from "what am I passionate about" (which is either everything or nothing depending on where you draw the lines), or "what am I good at" (which is too darned many things to be useful), to "what things do I do that I could see making a life out of doing?" things suddenly fell into much better focus.
Mr. Newport advocates in one spot no more than three focuses, one or two work focuses, and one hobby. And when I looked at my life and said "What three things are that important to me?" I came back with three answers easily. Mom/wife, writer, karateka.
So for at least the next year, and if results are promising, continuing on from there, I'll be concentrating on those three things. Of any commitment, the questions will be "Does it make me a better wife or mother?", "Does it make me a better writer?" and "Does it make me a better karateka?" if the answer is no to those three, then I'm not making a commitment to it.
This doesn't mean I'm not doing anything else, but that I'm not working on actively improving those things. I'll still play piano. I'll still sing. I'll still knit and do fiberwork. But I won't be committing to doing those things, or making active attempts to become better at them. In effect I'll become a purposeful dilettante at everything else to give myself the time and energy to really improve on the other three.<br />
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Which brings me to the rededicating of this blog. In writing my biggest problem is that I simply don't write enough. I've been doing better lately about getting my butt into my chair every day, but while I write a lot for someone off the street, I don't write much for a would be professional writer, let alone for someone trying to actively improve her craft. That's writing of all kinds, and I'm not excluding blog updates. I enjoyed writing the blog, and it is writing practice if I use it as such, so blogging is back on the menu. Expect to see updates at least several times a week. And as one might suppose, I expect to be covering a somewhat narrower range of topics. Not all that narrow - I am still a polymath at heart - but put through the lens of my more narrowed focus.<br />
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*Waves* Hi! I'm Cindy, your new writing/karate blogger! Wish me luck!Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com1tag:blogger.com,1999:blog-19041374.post-26263464904298719492012-01-31T01:35:00.003-05:002012-01-31T02:30:19.141-05:00Perfumery and other stuffActually, let's start with the other stuff, because by golly, I'm proud of this: <br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdBgEVQKTitucjpCK60AmC2BQ46GhDF74hxgxQ39bGr4OsxoPLOaXYpj4CzAgUrNBqleYxZONiaWFsTZqwkvF8LlwnpSKdxhOSJqvdcZ7PMMf5rZ-g5fT7ooytlgSw_OBF-l473g/s1600/Handiwork+001.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdBgEVQKTitucjpCK60AmC2BQ46GhDF74hxgxQ39bGr4OsxoPLOaXYpj4CzAgUrNBqleYxZONiaWFsTZqwkvF8LlwnpSKdxhOSJqvdcZ7PMMf5rZ-g5fT7ooytlgSw_OBF-l473g/s400/Handiwork+001.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5703681527684152386" /></a><br /><br />This is a piece of needlepoint I've been working on for over two years. I finished it this afternoon, and will be taking it to the framer tomorrow. I may even keep it. (I generally give my needlework away as gifts.) The kanji under the butterfly reads "Beautiful" - I will note that doing needlework of a kanji certainly ingrains it to your memory. I may have only a couple dozen kanji memorized, but "beautiful" is definitely one of them.<br /><br />Next up is a counted cross-stitch peacock. I have no idea how long it's liable to take me.<br /><br />Karate continues pretty well. We'll be shifting over to a new room next class because the Jazzercise studio is switching rooms. We've gotten a look at the new place, and as long as they finish by tomorrow night, it should be quite nice (they were still painting, and there were finishing nails all over the floor as of Thursday). I may bring a broom to class just in case, since a tetanus shot is not on my agenda for the evening. We had a good sparring night this last Tuesday, the first in quite a while. Once again, I wonder why defense is always the first thing to go when I'm not getting in good practice. Sensei D says he's almost back in decent enough shape to start sparring again, which would be awesome - it's been over a year since he had to stop, and as small as we are, it makes a big difference. We're also supposed to get two "new" students this week, which is even better. "New" is in quotes because one is a returnee - she trained with us three years ago, and then got into soccer. Now she's back, and with a good bit more maturity than before (8 to 11 makes a huge difference). The other is a TKD black belt who wishes to do Isshinryu. I haven't met him before, but Sensei TJ has. If both of them really join up and keep coming, it will make a huuuge difference to our classes, which would be wonderful.<br /><br />And last, though not least, the perfumes. Explanation first: Rob got me a sampler set of perfumes from ZOMG Smells! for Christmas. Through the month of January, I was trying one a day and posting the results on Facebook. Then it occurred to me that I really needed to keep my opinions on the perfumes somewhere where I could find them again, for future orders and the like. So I thought I'd post them here. Plus a lot of the people on FB got a kick out of the reviews, because the sampler set in question is ZOMG Smells! "You're wearing WHAT?!!" - a set of their weirdest named perfumes. So for my records and your amusement, a list of perfumes and my opinions on them - keep in mind that perfumes can smell very different on different people, so what I love, you might hate and vice versa. I do recommend their sampler kits though, great fun!<br /><br />In rough order from most loved to least:<br /><br /><span style="font-weight:bold;">Five Stars</span>:<br /><br />Sugar Dragon: Sweet and smoky - the site says sugared almonds, but to me this smells like rose incense. My runaway favorite out of this set, and the one I'm wearing daily now. When wearing it, I keep running my nose up my wrist, it just smells that good.<br /><br />Kudzu Doom: Goes on as resinous pine, turns mellow and flowery over the course of the day. Another one that makes me look like I'm longing to eat my arms.<br /><br /><br /><span style="font-weight:bold;">Four and a Half Stars:</span><br /><br />Kuiper Belt Objects Unite in Vengeance: Dark cherry and smoke. Similar in kind to Sugar Dragon, and I like it very nearly as well.<br /><br /><br /><span style="font-weight:bold;">Four Stars:</span><br /><br />Seagull Eating a Starfish: Light, dry and gingery. (Described as beach and sea scents with a gingery whiff of starfish terror.) The lightest of the scents that I really like. I tend to use it on karate days, where I don't want to knock people over with a stronger scent.<br /><br />Coronal Mass Ejection: Vanilla and orange on first application, turns into warm, sweet amber.<br /><br />That Dream You Have Where You're Naked at School: Sharp citrus/green scent that turns to vanilla/orange as it settles. For some reason I rather liked this citrus when I didn't care for most of the others.<br /><br /><br /><span style="font-weight:bold;">Three and a Half Stars:</span><br /><br />Sexy Giant Isopod: Starts as a powder and incense smell and ends up as warm amber. I like the final scent much more than the beginning, but don't find the initial smells offensive. This is an experimental scent, and not part of the standard ZOMG offerings.<br /><br />Pirate Queen (off duty): Smoke and burnt wood which mellows into cloves and incense.<br /><br />Deified: A quite sweet scent, mostly vanilla notes. I found it pleasant, but uninteresting on me.<br /><br />Brontosaurus Loves Triceratops: Not sweet at all - warm, grassy and dry start to finish. Would make a nice guy's scent, I think.<br /><br /><br /><span style="font-weight:bold;">Three Stars:</span><br /><br />Four Seasons in Mighty Contention over Trivial Matters: Starts off with a kick of anise, then for me mellows out into sweet amber. I gather this one is particularly sensitive to personal chemistry, smelling very different on different people. I rather liked the smell after about two hours, but knocked a point off the score for the strong anise at the start, which I didn't like at all.<br /><br />Snail Fur: A light and woody scent going on which becomes a light, warm amber, which somehow smells fuzzy. Pleasant and light.<br /><br />Swift-Tuttle's Shiny Butt: Light woods and resins. Nice enough scent, but it had no staying power on me - it was gone within a couple of hours.<br /><br />Wrestling Tigers While Calling Your Mum Long Distance: Complex and powdery. It was hard for me to discern individual notes in this one. Okay, but unremarkable.<br /><br /><br /><span style="font-weight:bold;">Two and a half Stars:</span><br /><br />Lemonbomb: Pretty well as one would expect. Strong lemon to start with, with a slightly astringent smell in the background. It fades to a citrusy amber. Not horrible, just not my scent at all.<br /><br />Soft Lavender Cake: Strong cake batter smell, fades in to the more herbal lavender scent. Really, really smells like baking cake - to the point where Aaron wandered through the room and wanted to know what was in the oven. <br /><br />The Triumph of Direct Current over the Peril of Alternating Current: Starts as orange and pepper and mellows into a citrus/incense scent. I would have thought I'd like citrus scents (I love them in the house), but I just didn't care for most of them on me.<br /><br />Smoky Black Chai: As advertised, strong spicy tea/chai smell. I like it once it fades a little, but there's a very strong initial kick of anise that I didn't care for at all.<br /><br /><span style="font-weight:bold;">Two Stars:</span><br /><br />Requiem for the Juan de Fuca Plate: Minty! Starts as chocolate mint. Over time the chocolate fades out, leaving mint and incense. Apparently I just don't care for mint in my perfumes.<br /><br /><br /><span style="font-weight:bold;">One and a half Stars:</span><br /><br />Candy Mechanic: Chocolate with a whiff of machine oil. Oddly enough it's the chocolate I object to. It really does smell like fudge sauce, and I don't want to smell like an ice-cream sundae. If you do, this might be the scent for you.<br /><br />Giant Robot Birthday Party: Coconut, vanilla, cake - and a metallic tinge, like a cake that's been baked in an old, scratched aluminum pan. Didn't care for this at all, the metallic tinge is very slight, but enough to put me off, and the main perfume scent is too sweet for my taste.<br /><br /><br />- there was nothing rated under one-and-a-half stars. My rough divisions are: <br />5 - love, love, love: want to smell myself all day long<br />4.5 - like a lot, will happily wear, but just don't obsess over like the fives<br />4.0 - like a lot, will wear willingly, but isn't as much "me"<br />3.5 - like pretty well, willing to wear, but doesn't excite me at all<br />3.0 - okay, willing to wear, but has some note that bothers me<br />2.5 - ehh. Not objectionable, but not something I want to wear<br />2.0 - ehhh again. Don't care for it, but not awful.<br />1.5 - don't like at all - not terrible smelling, but not good either<br />1.0 - actively dislike<br />0.5 - this is perfume? Why would anyone wear this?Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com0tag:blogger.com,1999:blog-19041374.post-62769923476532934232012-01-19T01:42:00.003-05:002012-01-19T02:19:59.503-05:00Welcome to 2012!Wow - has it really been Halloween since I last posted? I need to do better about updating here! It's really easy to get out of the habit, and the next thing you know it's months later and you haven'tput a thing on the blog. Oops!<br /><br />Life has actually been fairly busy over here. Karate continues apace. All three of our white belts have passed their yellow belt tests within the last month, so congratulations to all of them! It's very nice to look at the class and see all that color. Now I just want to see a little less color again - a few new white belts, and our brown making the leap to black would make the winter just perfect.<br /><br />I, personally, appear to be on a serious learning binge. Given that I'm always learning something (hence the name of the blog) this translates into a serious amount of new stuff coming down the pike. In karate, I'm plugging away at Urashi Bo, the longest of our kata, and my second-to-last 1-person kata to learn. I seem to be about a third of the way through right now, which means about the length of one of our normal kata. In karate-related, I'm plugging away at learning Japanese. This is seriously fascinating, and the more I learn, the more interesting it gets. It's very, very different from English, and it's probably going to take a while to achieve any fluency. Right now I can form and parse simple sentences. I can (for example) Ask how much something is, where something is, order food, introduce people, or discuss the weather (and have some prayer of understanding answers). We'll see how all this holds up the next time it gets put to use (2013 at the next World Tournament at the earliest).<br /><br />In addition, somewhat inspired by the Japanese, I've been brushing up on my French, at which I used to be fairly fluent, but which I let lapse after never really having a real-life use for it. I may never speak French real-time, real-life to a French person, but at least I can read my Tintin and Asterx le Gaul books in the original (OMG there are soo many puns in the Asterix in French. It's awesome!)<br /><br />We have a new choir director at church now, and he's exercising me pretty thoroughly too. Whereas the previous choir director seemed to be a little reluctant to have me sing, and would often only decide to have me do something reluctantly and at the last moment, the new guy seems to be more than eager to have me do solo work. Unfortunately the first thintg he's pulled out for me is gospel. I love good gospel, but I have never trained or sung gospel (unless you count two songs sung as part of my HS choir), and my usual style of presentation runs to the formal and somewhat stiff. I'm very afraid that me attempting gospel may be more pathetic than inspiring. Or possibly inspiring of laughter! I'll give it my best, but we'll have to see how it goes down. I'm very hopeful, though, that once he runs me through my paces on a couple of his choices, he might let me choose to sing something of my choosing, which would be really awesome. (Also something that's never happened at this church. I tend to do solo work when it's down to "We want to do this piece, and Cindy's the only one who can (hit the high B, handle that run, learn it that fast, etc.) which means I do a decent amount of solo work, but almost never stuff I love.)<br /><br />In a complete aside, I did not, despite pre-planning for almost an entire year, get to do a duet of "Oh, Holy Night" at Christmas. For some reason I did not quite fathom, the Music Committee decided that the ladies who did the piece three years ago should repeat this year - and then those ladies decided, when it got to be the week before Christmas and they were still having serious performing problems, that they would bow out and not sing. At which point it was too late for Cindy and Cindy to get back in. So bummer, I still didn't get my shot, but at least we broke the standing tradition of "It's not Christmas until somebody mangles "Oh, Holy Night"! Seriously, if after this much effort I had had to listen to a bad rendition, I think I would have burst into tears.<br /><br />And the last bit of new learning for the new year, and my favorite of all? The flute! My wonderful sons, with their father's collaboration, got me a flute of my very own for Christmas. (My precioussssss!) Despite various family medical emergencies (now over, thank goodness), I have practiced every single day since. I'm up to about an octave-and-a-half of range, though I still have some problems with flipping registers unintentionally. Recognizable (if breathy) music can be heard! I've wanted to play the flute since middle school, and it would never have occurred to me to ask for one for Christmas, but I really, really love it it pieces.Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com1tag:blogger.com,1999:blog-19041374.post-42570761621377875552011-11-01T00:44:00.003-04:002011-11-01T00:50:23.122-04:00Per Request<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5wO5p2ErZSvCVjebCPXsBZr545CwQ9bEtnRb1GJj-AUh6j0CQiofmwqg2bLJlL5TBl69vYqsAclSdFmma3B2h9-pQRs-2cgmOHY0gx_nS9da2VhKWkE4pAKjmUEY4hLVCiCb2eQ/s1600/House+photos+045.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5wO5p2ErZSvCVjebCPXsBZr545CwQ9bEtnRb1GJj-AUh6j0CQiofmwqg2bLJlL5TBl69vYqsAclSdFmma3B2h9-pQRs-2cgmOHY0gx_nS9da2VhKWkE4pAKjmUEY4hLVCiCb2eQ/s320/House+photos+045.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5669885049016080210" /></a><br /><br />Robbie as Colonel Roy Mustang. I may be biased, but I think he is rather frighteningly good looking in a uniform.<br /><br />Good looks were obviously not relevant to Aaron's Xenomorph costume. He had literally not an inch of skin showing. Unfortunately, he also couldn't see all that well, since the eye holes are little vertical slits beside the internal mouth. The tail didn't last the evening either, it ripped off its mounting and had to be left home - which was probably just as well, because with the lack of peripheral vision, Aaron couldn't see what was beside or behind him, and kept whapping things with it. He did get a lot of compliments, though several people thought he was a Predator rather than an Alien. Light trick-or-treating this year for some reason - we still have about half of our candy, and usually we get cleaned out. <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiovKpbDGbYWS-gNSbXVl0oyuhG_NeXGyEd4vPR_LTk9LVsslcHpjye2CbuYPEgAae1NLticyHv9z9kt7hDuBcOvVGZTcZVzkLOhW2tXEtixM3RE_UxbpidssY8g9v9v1vTu-6VNA/s1600/House+photos+048.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiovKpbDGbYWS-gNSbXVl0oyuhG_NeXGyEd4vPR_LTk9LVsslcHpjye2CbuYPEgAae1NLticyHv9z9kt7hDuBcOvVGZTcZVzkLOhW2tXEtixM3RE_UxbpidssY8g9v9v1vTu-6VNA/s320/House+photos+048.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5669883740397405618" /></a>Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com2tag:blogger.com,1999:blog-19041374.post-68881792025388402852011-10-30T22:08:00.003-04:002011-10-30T22:39:42.898-04:00SeminarSensei and I spent most of Saturday at a pressure point seminar given by Will Higginbotham. This is the second time we've gone (he apparently does one in this area every year around Halloween), and as it was last year, it was really interesting. This year's seminar was a bit more focused than last year's, primarily because we had half-a-dozen police officers attending, and Sensei Higginbotham concentrated heavily on things they would find practical: control grips, come-alongs, ways to safely intervene in a third-party assault - that sort of thing. (Several wrist and finger-locks, Bill!}<br /><br />I find pressure points fascinating, but they remind me of my father's description of neuroanatomy. You need a certain (large) amount of base knowledge to sink in before you can start putting things into a framework that makes sense. Right now these seminars feel like standing in a rainstorm with a teaspoon trying to collect the water. I come away with a few specific things that work (or not to do), and a broader fact or two, and try to remember them without having much of a knowledge structure to hang them on. I know the structure exists, but I haven't got it straight in my head yet, so things don't stick all that well. But each time, a little more makes sense, and I trust that one day, if I keep working on it, it will start fitting together sensibly.<br /><br />It turned out to be a good thing that I was scheduled to conduct the choir instead of sing this Sunday, though, as I turned out to be the victim of choice when it was time to practice peeling off a guy who's trying to choke someone. So I got choked, with varying degrees of enthusiasm, by about eight people, several times each. My neck is still feeling it today, though not too badly.<br /><br />The conducting went pretty well - especially for my first time ever. The choir was very kind to me, and paid excellent attention. If I'm going to do this again, I need to work on keeping my beat pattern while also giving cues, though. I know how to sketch time, and I know how to do entrances and cut-offs, but I tend to lose my pattern (though fortunately not my beat) when trying to combine the two. This might have something to do with it having been 23 years since my one semester of conducting class. (If you ever read this Constance, THANK YOU for being so stringent that most of what you taught has stuck. It saved my butt.) We're currently auditioning candidates for a new organist/choir director, and with any luck we should get one before Advent.<br /><br />I'm also supposed to be playing my first full church service on the 13th of November. This is our Kirkin' of the Tartans service, with bagpipes and drums, in addition to the organ. I'm nervous (it's a lot of music), but I think it's mostly in hand - except possibly for the bagpipe bit. The piper said something to our priest about organ music to play with the pipes, but hasn't provided any - and if she doesn't get it to me within the next 2-3 days, there's no way I'm playing it. My biggest failing as an organist at this point is the sheer amount of time it takes me to get new pieces under my fingers. E.g., I should play this service fine, but it's been two months of prep work to get here.<br /><br />For tonight, I'm working on Halloween costumes. Sewing for Robbie's costume (<a href="http://roy-mustang-rank-colonel.net/">Colonel Mustang</a> from Full Metal Alchemist), and somewhat more engineering like stuff for Aaron's (the Xenomorph monster from Alien). My children don't believe in easy Halloween costumes. Actually, if they keep this up, I'm going to have to teach them how to sew, so they can do these themselves.Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com2tag:blogger.com,1999:blog-19041374.post-20770998282635960812011-10-23T21:27:00.000-04:002011-10-23T21:33:13.682-04:00Dare<a href="<object style="height: 390px; width: 640px"><param name="movie" value="http://www.youtube.com/v/sb2YOg_dkQM?version=3&feature=player_detailpage"><param name="allowFullScreen" value="true"><param name="allowScriptAccess" value="always"><embed src="http://www.youtube.com/v/sb2YOg_dkQM?version=3&feature=player_detailpage" type="application/x-shockwave-flash" allowfullscreen="true" allowScriptAccess="always" width="640" height="360"></object>"></a>Perpetual Beginnerhttp://www.blogger.com/profile/09625596315528064536noreply@blogger.com1