Coming up on belief

Way 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.

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."

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.

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.

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.

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.

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.

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.

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.

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.

Infusion #2

Things 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.

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!)

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.

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.

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.

That was the week that was

It 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.

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).

We did find out two interesting things though.

#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.

#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!)

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!

Where We Wait

I was going to call this post "Where We Stand", but honestly our lives are mostly waiting right now, so that seemed more apropos.

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.

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.

 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).

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.

I'll probably say more about the Okinawa trip in later posts as things occur to me, but for now, onto the Rob update.

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.

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.

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.

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.

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).

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.

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".

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.

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.

I 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.

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.

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.

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.

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.

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.

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.

Three days to Okinawa! Packing! Last day of school! - busy, busy the rest of the week.

Plans for the week

Today 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!

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.

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.

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.

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).

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.

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.

Quickie

Having just realized I haven't updated in a while...

First off - Bill, I know you're trying to get hold of me. I've been scrambling around like a madwoman this week. I should be mostly available Sunday, except for possibly needing to be at the airport from about 2-3:30pm EST.

Yikes! Checking back for the last entry, so much has happened it feels like a whole different life.

The big changes:

1) PET scan results came back. The primary tumor is bigger - much bigger (it was about the size of an orange to start with). Worse, it's metastasized into the lungs, and possibly the brain - though we have no proof of the latter.

2) His doctors universally agree that there's nothing left they can do for the cancer. The remaining prognosis is a few days to a few weeks.

3) Dad W. spent most of the last week in the hospital with aspiration pneumonia - he had a crash of his condition that had to be seen to be believed. He is now recovering from that, but nobody is sure where the improvement of the departing pneumonia will meet the decline from the progressing cancer. He's currently sleeping about 22 hours a day, and is only intermittently coherent when awake.

4) We did (finally!) manage to get the various useful end-of-life legal documents done, signed, and attested to. This was, in fact, almost two full days of work, due to the intermittent coherency. It takes an unbelievably long time to read twenty pages of legal documentation to someone, and make sure they understand it, when their coherent periods are about five minutes long.

5) Dad W. has been moved to a nursing facility around the corner from our house (literally less than 2 minutes away). We had to ditch his supplemental insurance to do it, but heck - it's not like he has other things to spend his retirement fund on, right? There was no way he could come back home - not without completely renovating our downstairs - and he didn't want to stay in the hospital until he died. Plus, the new place allows me to bring the dogs to visit (one at a time).

6) We've called in Hospice, and they sent their first evaluator today. It was a little surreal, but I did like the guy. I had to grind my teeth a couple of times - such as when he asked Dad if he'd discussed end-of-life issues with his family, and Dad replied "I've tried, but they don't listen!" As if he hasn't been dodging that subject with all the agility of a fencer for the last six months. Or likewise, when they asked about problematic issues, and he said he had a problem with how dependent he's become. This from the man who will ask me to push the nurses' call button for him, because it's too much trouble. (It's strapped to the bed about 2" from his left hand.) Dad finds it disturbing when he can't do something - but he sure as hell has no problem with me doing stuff for him if it's even a tiny bit difficult.

And now the dilemma of the week. As of this morning, I have legal authority to take Rascal to the vet and have him put down. I feel, very strongly, that I ought to do this. In my opinion Rascal should have been put down three months ago. The poor dog has no quality of life left. On the other hand, there's no doubt at all that Dad W. would disapprove of this decision wildly - and what the Power of Attorney is for is letting me make the decisions I believe Dad W. would want.

On the gripping hand - Dad W. is so turned inwards by this point that he doesn't talk about the dogs or ask about them at all - ever. If I bring Scooter by to visit, he enjoys the visit, but unless I bring up the dogs, he doesn't ask after them. Am I obligated to keep this poor, ancient, decrepit dog alive because Dad W. would want me to, even though he doesn't seem to care, wouldn't ever know, and chose freely to give me the legal power to do otherwise?

I guess that wasn't such a quickie after all. Posting will probably be uneven for the next little bit, for obvious reasons.

The Cry of "Wolf"

I had a few thoughts last night about The Boy Who Cried "Wolf!" - ways in which I hadn't considered the story before. Not surprising, since I don't usually engage in deep analysis of fairy tales unless required to by a teacher.

The story is told from the point of view of the boy. Makes sense, since the moral and warning are intended for people who would yell alarms too soon. But that means that the other dilemma in the story isn't addressed. After all, the villagers in the story probably don't want their shepherd eaten, even if he is an idiot from time to time, and they definitely don't want to lose their sheep - that's the whole point of putting a shepherd out there in the first place!

So what are the poor villagers to do when wolves are a real danger, but their only warning system gives them way too many false positives. How do you tell when the wolf really is among the sheep?

This is part of the dilemma we've been having with Dad W. He does have cancer; it's definitely life-threatening; it can cause a lot of symptoms, many of which aren't obviously cancer-related. But he's also a man who has trouble distinguishing annoying things one can and should push through from the medically dangerous. Up until just recently most of his symptoms have been the result of his poor condition and debilitation, rather than from the cancer. I've spent months muttering under my breath about the idiots down in the hospital in TN (the same ones who were treating Mom W. - isn't that reassuring?), who let him stay in bed for five days right after his biopsy. He lost huge amounts of mobility and muscle tone in those five days, and he never got them back. But instead of realizing how his lack of activity was contributing to his debilitation and pushing to get it back, Dad attributed it to the cancer, and his response to getting fatigued doing simple things was to rest more: which led to a downhill spiral of doing less and less as he lost the ability to do the things he had stopped doing because they were tiring.

So how do Rob and I as his caregivers figure out when his fatigue and immobility is self-induced, and we should push him to do more, and when it's really a sign of cancer progression, and we should drag him back to the oncologist?

This last couple of weeks, I think I'm seeing a cancer decline. Dad is deeply fatigued - he can spend 18-20 hours a day sleeping, not just sitting or lying down as he used to, but actually asleep. His skin tone is awful - a yellow/gray shade that makes him look like a walking corpse. He's running low-grade fevers more nights than not, sometimes with accompanying vomiting - and he doesn't wake up when he starts throwing up. He's nearly choked to death in the middle of the night twice in the last week. He's started hiccuping several hours out of every day.

Rob still thinks most of this is a continuation of his inactivity decline (except the fevers, but he thinks the failure to wake up, and inability to roll over when he's woken up are inactivity). He and Dad are still optimistic about what yesterday's PET scan will show. (Dad doesn't remember the night-time vomiting, and is having serious trouble tracking time, so he's not aware of just how much time he's spending asleep.) I'm not. I think we've finally hit the point, where if we hadn't tripped over Dad W's cancer back in the fall; if he had never had those five days of bed rest, and had maintained his mobility - we would be looking for and finding the cancer.

I think this time, the cry of "wolf!" is real. And with cancer in the liver, it's not usually long from a genuine cry of "wolf!" until there's not much left to do.

Woot! And Stuff

Robbie is now an orange belt! He did great on his test, a couple of minor hesitations in his first kata, all successfully negotiated, and other than that did everything within his belt requirements, and several things that aren't. There've been a lot of times I thought he'd never get here - especially when he decided to drop karate a couple of months after getting his yellow belt, but since he came back this fall, he's been putting in the effort, and it really shows. Congratulations, Robbie!

In other news, I'm still planning on going to the Nashville Isshinryu black belt only tournament, but I'm going to observe, not compete. I haven't sparred in a couple of months, my weapon katas are a mess (learning Urashi Bo has screwed up Tokumine, and Urashi itself isn't secure enough yet to be reliable, Chatanyara no Sai is nowhere near tournament condition), and regular kata is usually my worst venue. So rather than put the extra pressure on, I'm just going to go and hope to run into some of the people I trained with way back when.

Dad W. had a fall Sunday night. No serious injury, but he bruised up his side fairly well. My big concern is that he's wanting/needing (it's hard to tell with him) a boost to sit up on the edge of his bed now, and I'm worried that by the time the bruises aren't hurting him, he'll have lost the necessary muscle tone to sit up on his own. Experience with Dad says that once a piece of functionality is lost, he doesn't get it back. Plus, if he needs that much extra boosting, we'll probably have to ask for a different aide. Barb is lovely, but she's also 70 and barely over five feet tall - she can give him an extra boost, but she can't support any significant percentage of his weight - and for him to get up today required some serious heft.

Mom has an appointment with a local oncologist on Friday. She should find out then about probable chemo/radiation plans. For the moment she's continuing to heal well from the mastectomy.

Finally, anybody whose visited our house in the past will be happy to hear that Rob managed to fix the leaky tub faucet. It's been leaky since we moved in five years ago, but after trying to fix it, our plumber declared that it was sealed too tightly, and that fixing it would take $800 and breaking into the wall behind it. So we just lived with it. But this last week it finally got too bad to be ignored, and it turns out that the 6'6" guy who figures that he's got nothing to lose and possibly $800 to save, when working with a really big honking wrench, could knock the faucet loose and get in to repair it. I kept waking up last night wondering what was wrong, and then realizing that the house was silent, and I wasn't hearing the continual drip. Ahhhhh.

Where We Stand

First off, thanks to everyone for the well wishes and support. They are all much appreciated. I'm down at my parents' house right now, but will be heading back home tomorrow.

In good news, Mom is recovering well from her mastectomy. She should be able to get the drain out in a couple of days, which I'm sure will be a relief. Also, Dad W. likes the aide we found to help him while I was gone (I like her too). She's an older woman, but very bubbly and active (and likes dogs - a must around our place). Having her available should give me significantly msore flexibility for when responsabilities conflict.

The bad news is that several of Mom's sentinel nodes (5 of 11) showed positive, so there's chemo and radiation in her future. The exact plan hasn't been decided upon yet (we're awaiting a call from the oncologist), but regardless, it's not the news we were hoping for.

Bits and Pieces

Mom is scheduled for a mastectomy on Friday. It looks promising that she may not need chemo, but we won't find out until they dissect the sentinel nodes during the surgery. The current plans are somewhat fluid, but most likely I'm going to be driving up to pick her up and bring her back here initially, and then either I'll drive her back home (she's having surgery three states over from her home, but only one from me), or Dad will come up and get her. She and Dad are sounding much more like themselves now that there's a plan of action. My father does not like having a medical crisis that he can't do anything about, and I think that was a lot of why he sounded so anxious when I first spoke to him - they got the biopsy results late on a Friday, cancer is out of his expertise, and he couldn't really do anything until the following Monday - cue an anxious, out-of-sorts guy.

Dad W's oncologist has decided she's unhappy with how fast he's rebounding from his anemia (I.e. very slowly), and has decided to add an additional treatment to the Procrit injections he currently gets once a week. The new treatment will mean going to the hospital twice a week. I hope I can talk them into making one of the visits concurrent with his Procrit, or that's going to be an awful lot of time eaten up - getting Dad W ready to go out, out the door, to the hospital, treated, and then back home and settled takes about two hours, even though the hospital is ten minutes away.

I learned the end of Urashi Bo tonight. I'm liking this one quite a lot, but it's going to cause problems for the April 10 tournament I mentioned last time. Urashi Bo is too new for me to do a really good job with it - but I went back and practiced Tokumine no Kun today, and Urashi has also done a good job of making me hesitant with Tokumine - they're so similar in spots that it's confusing my muscle memory. So now I have to decide (and quickly!) whether to work hard on bringing Urashi up to snuff, go back to drilling Tokumine, or try to work up Chatanyara no Sai, which has languished the last month and is nowhere near ready. Great - fried brain is in no condition to make decisions! Don't make me make decisions!

In kidlet news, Robbie continues to do well with his flute, having put his sights on third chair (he started at sixth and is currently at fourth). If he gets up to second chair he's going to have a dilemma, because first chair is the girl he's had a crush on for the last three years. To celebrate his increased flute facility, I got him a book of flute and piano songs, with the promise (reinforced by my organ teacher) that if he learns one well, we can play it together for the offertory at church sometime.

Aaron is still running straight A's for the year (and is adoring having better grades than his brother). We should get the results back on his ISTEP tests in about a month, but everyone including his teacher and him thinks that he likely did very well.

Unfortunately, Aaron is very grumpy with lots of semi-meltdowns today because his shoulder started hurting him over the weekend and it's still bothering him. We took him to his pediatrician just as a precaution (mainly because he didn't do anything obvious to injure it, so we're a little mystified), and she gave us the expected advice - ibuprofen, heat, rest. Aaron is quite put-out. He expected the doctor to be able to fix his shoulder, isn't that what doctors are for?

And I decided a bad week and no husband deserved a small treat. So I bought myself a shawl pattern - Heere be Dragones. The same seller makes several other equally stunning shawls, including patterns of a Chinese Dragon of Happiness, a Pegasus, a Celtic Dragon, and a bird in a bamboo forest. However, I'm not a huge shawl knitter, so I restrained myself.

And that's the news down in Wood territory.

Money, money, money

I've been earning money this month. Weird that it should happen just when I'm already running in three other directions, but that's the way life is. Suddenly all of my potential income streams started producing small amounts at once. I got a paycheck for playing the funeral (which I hadn't asked for, nor expected), I've been commissioned to do some knitting, and I've got my first paying editing job. I'm most excited about the editing job, as editing is something I've always done for friends and family for free, not for pay.

I've been hired by a grad student whose first language is not English to edit her papers from now until through her dissertation. The rate isn't high, as she doesn't have a lot of money and I don't feel right about charging full professional rates my first time out the gate, but it's not rock bottom either, and it should be a small but steady income stream. Judging by the first paper, it should be rather fun too. She's a good writer with interesting ideas, but some significant English grammar problems. As opposed to the last friend I helped with editing, who was perfectly fine with grammar, but unfortunately just wasn't a particularly good or interesting writer. It's a lot harder to make a blah idea sound interesting than to clean up tense agreement.

Dad W's problems with fatigue are continuing. The weekly Procrit injection check showed a low-grade fever, low blood pressure, and his lowest CBC yet. His temperature is back to normal today though, so we may be over the hump. Radiation is Thursday, and I have no idea if they're going to keep him overnight or not. Unfortunately there's no telling until we see how he reacts to the procedure on the day. I'm beginning to wonder how much the radiation specialist is paying attention to Dad's actual condition, though. According to Rob, the doctor told him Dad should be walking a mile a day, which just is not going to happen any time soon. I would consider getting him to go once around the block a miracle. Up three houses and back is a good day. Fortunately his oncologist and the chemo guy both seem to be paying a little more attention. The oncologist started him on the Procrit, and I'm going to see if she's willing to send Dad to a PT the next time we see her.

Robbie may be having his orange belt test here fairly soon. Sensei started pretesting him last week, and says that if he can do a good run-through the next time they're both in class, then he'll schedule in the test. One of our older boys is getting ready for his green belt test, and the two of them may well test on the same day. L will be thrilled if he gets to test soon, as this will leap him ahead of his older brother and mother - up until now they've all tested simultaneously, but L has been here at least once a week since the beginning of the year, while the rest of the family has been skipping more often than not. They have good reason, but good reasons don't make up for missed class time.

Round Two!

Yesterday started Dad W's second round of chemo/radiation. They put in the chemo beads yesterday morning. They'll sit around and do their job for about two weeks, whereupon we go back and toss in the radiation beads.

This round is looking like it's going to be rougher than round 1. First of all, Dad W's condition has slipped somewhat since the first round, primarily due to being snowed in a lot, and a subsequent lack of motion on his part. If the weather is nice, I can sometimes get him to go out to the Y, or to walk a few hundred yards up and down the street (It really doesn't take much to count as "exercise" for him right now. Taking a shower is downright aerobic.), but if the weather is bad, getting him to move inside the house is pretty much a write off. Secondly, he's reacting more badly to both the procedure (they kept him overnight this time as he was vomiting and nearly aspirated a couple of times), and then to the chemo itself - he's been on pain medication most of today, when last time he needed barely any.

In ways both funny and alarming, Dad is also showing signs of intermittent confusion. Most of the time he's perfectly well oriented, but sometimes not so much. For example, earlier in the week he woke me up at 5am, demanding to know when I was going to start cooking dinner. He had woken up, and thought it was 5pm. I got him oriented and back to sleep, only to have him repeat the scene almost exactly twice more in the next two hours. I'm not sure if this is a reaction to the treatment, to the cancer, or something else (I know the procrit he's on can cause TIA's for example).

Poor Rob is a wreck right now. He flew in from his month out of country (he worked 24 of the 28 days he was down there, averaging 12 hour days), and arrived Thursday afternoon, only to have to get up at 4:30am to get Dad off to the hospital. Now the plant here is having internecine wars over who gets first dibs on him to fix their stuff. The curse of competency strikes again. OTOH, unless the plant is threatening to blow up, they will leave him alone tomorrow, or I will have something to say about it (to them, not to him). They lived without him for 28 days, they can survive long enough for him to have a day off.

I have survived my six weeks of being acting organist at church. R is back now, which is good, since I've blown straight through my entire repertoire. Last week we had a short notice (though not exactly unexpected, the lady was triple digits old) funeral, and I had to figure out how to hack my way through Jesu, Joy of Man's Desiring in four days. I am quite possibly prouder of making it through that piece acceptably, if not exactly in grand style, than I am of the other six weeks. I put in more than twenty hours of practice in four days, very nearly getting snowed in at church one night, when it started snowing just as I arrived to start practice - which would have been a rude shock to Dad and the kids when they woke up in the morning. When R gave me my assignments for my next lesson, he handed me a new piece with the following comment "Don't expect to have this down in a week, or even a month. This will be about a year-long project - it's about as hard as Jesu, Joy." Which just made my jaw hit the floor. Jesu, Joy is a year long project piece? And I just played it from scratch in four days? Holy crap!

In karate news, I'm finally getting back to practice regularly - between the snow and the family obligations, I didn't get in much in January. I've passed Chatanyara no Sai to Sensei's satisfaction (if not mine, it still feels very choppy to me), and he's started teaching me Urashi Bo. I have very mixed feelings about Urashi - on the one hand, it's a bo kata and I do love my bo. It's also got a lot of cat stance with a forward block, and that's one of my best stance/move combinations, making this an potentially excellent competition kata for me. On the other hand, it's an inherently choppy kata, without a smooth flow even when performed by the people who are acknowledged to be great at it, which I don't much care for. We'll have to see how I feel about it when I'm not stopping every other move to remember what comes next.

Also congratulations, Bill, on your orange belt in jiu-jitsu! I know I already told you on the phone, but thought it deserved reiterating here.