Tuesday, May 31, 2005

ganache

My latest Make It Low Carb column, Ganache, has been posted over at LowCarbLuxury.

I have to say, I'm completely tickled with this recipe. It just amazes me how well it works. A little patience, a lot of stirring -- yum! And no complicated ingredients, either (well, aside from the non-sugar sweeteners, but I have those anyway.)

I even tried this with coconut milk instead of the heavy cream for an LID indulgence, and it worked! It doesn't set up in the fridge, but that's OK. It makes a lovely, glassy chocolate sauce with a slightly coconut-y taste. Mmmmmm. It has been luscious on my Haagen-Daz (I always want to laugh when I type out that name, since I know it's totally made up) raspberry sorbet. I had to go with the H-D sorbet, I wanted raspberry, and the other brand's raspberry had carageenan in it. That's a no-no on LID, so H-D, pretense and all, it is.

Or rather, was. The pathetically empty container is just inches from the keyboard as I type this.

owning up, giving up [YEWGO]

YEWGO: Your Eyes Will Glaze Over. Sorry -- therapeutic for me, a waste of time for everyone else.

Update: Actually, I saved the encyclopedic version of this privately, and cut this one, for public consumption, down considerably. Hopefully, glazed eyes will be averted, but no promises.

History
Last night, I wrote this post after a particular quote in a discussion thread got me thinking about the topic. I wrote it very late, and went to bed, not thinking at all about it until I got back from the endo's this morning.

It was very late when I got to bed; I'm running on about 3 hours of sleep today. I'm a zombie and would be even if it hadn't been one of the craziest days, ever. But we've all survived OK somehow. The tiredness has slowed down my thinking about what happened around that post, though.

What happened is this: in the original version of the post, I had an introduction in which I briefly reviewed the facts of the discussion thread that inspired it, and I linked to the thread itself. The woman who started the discussion thread was "alerted to" my post, and had a fit about it.

First, she linked to it (unfortunately with a bad link). Then, because the link was bad, she copied-and-pasted the entire post to the forum. Here's a bit of her reasoning: "...I think it's important for others to see what can happen just because you don't think another person's advice is appropriate for you."

My immediate reaction to this was: huh?
It took me a while to figure out that she thought I was wrong to repeat information she had included in her post in my blog, and to link to the discussion thread. It took me even longer to figure out that She thought I was talking about her. She thought I wrote that entire post because I was furious with her for disregarding my advice. (heh)

She didn't get that I was taking that one quote of hers and expanding on it, pushing it to the extremes. She also apparently didn't read the whole thing, because I wrote:
I don't think the woman in the discussion thread is dooming her daughter to a lifetime of distrust and self-esteem issues. I'm not making any assumptions about her general parenting, but she certainly did get my wheels turning.
(Note: this quote is now slightly different in the edited version, because the discussion thread isn't mentioned anymore.)

Naturally, I got defensive, but I managed not to make a further idiot of myself, at least in public. I sent private messages to a few people explaining that the blog post was about me, not about her... and I privately asked the moderators to remove the posts (they decided not to).

I had so much on the schedule today that I was forced to go away and come back to this issue several times. On the last iteration, it finally became clear to me what I should do: apologize, and remove the specific references to the discussion thread from the post.

Owning Up...
It doesn't matter what my intentions were, and it doesn't matter that the woman is a careless reader. Something I did upset her, and even though I wasn't trying to hurt her, I am still responsible for what I did. She wasn't the only one who read a personal criticism interpretation into that post -- but the others who did share this woman's dislike of me, too... but you know what? That doesn't matter, either. It doesn't matter if it's their perspective that shades everything I say as an attack, whether I mean it that way or not. If this was perceived as an attack, it is up to me to change it so it isn't, anymore.

The post was about my own ideas regarding "super parents", as well as my struggles with my own vulnerability. It really did have nothing to do with that woman, other than the fact that her quote set me thinking about it.

So, I edited the original post, removing the first few paragraphs of detail and the link to the discussion thread. I also posted an apology on the board.

It probably won't be enough for the people who wish to be offended by everything I say and do, but it's the best I can do in this situation. In an ideal world we would all be able to discern each other's intent perfectly on every reading, but that is not this world.

I really am sorry.

Giving Up.
I have asked one of the mods to delete my account. She has asked me to give it another day to think about it, and commended me for changing my blog post and making the apology. I did those things because they were the right thing to do.

Now, I think the right thing to do will be to just stay away from the forum entirely. It is astonishing how much venom she and the others like her on this forum ascribe to me. They could just ignore me, but they go out of their way to post and make journal entries with the sole purpose of telling me how arrogant, condescending, rude, sick, twisted, and generally unpleasant I am.

There are two ways of dealing with bullies: stand up to them, or walk away. I think in this case, walking away is my best option.

To paraphrase one of my favorite scenes from The Two Towers: What can I do against such reckless hate? Ride out, and leave it behind.

100 miles, 6 stops, 3 sticks, one sore arm

Today: got up, took a shower, didn't have time to do my hair so I just let it dry. (It now resembles a tumbleweed.)

Took DS2 with me up to Phoenix, which was great because I could use the HOV lane and did not get stuck in traffic. At the endo's office, I got stuck 3 times: twice for the blood draw, and once with the Thyrogen shot. DS2 was great during the whole thing. I told him what was going to happen, and he said, "Oh! I'll just wait out here, then," and he sat on the floor in the hallway, just by the door. He could hear my voice but he didn't have to see anything. The doctor's office has some cool photos up that he spent his time looking at. It was only a few minutes, after all. The shot didn't hurt at the time, but man, does it hurt now. "Your arm may be sore," the tech said kindly. I just brushed it off, how bad could it be? Well, bad enough that there's about a 3 or 4 inch area around the injection site that's significantly hotter than the rest of my arm. The whole left arm, shoulder, and left side of my neck are very achey. Fortunately that didn't kick in until later. I should go look up whether ibuprofen would be OK for this pain. I can't think why it wouldn't be, but I won't take anything without checking it out first.

Got home and found I had inadvertently ignited yet another fire storm over on the forum; more about that in a different post. It's one thing to provoke an argument and then sit back and enjoy the fireworks -- and this not something I ever do on purpose, but sometimes it is funny to see how people react. But last night's post wasn't meant to be incendiary in the least, and yet somehow it turned out to be. So that sucked, and I flopped around trying to deal with that until it was time to go get DD.

Went and picked up DD at school, and then traipsed all of us to Trader Joe's because we had no bread or milk. Stopped at BK on the way home for the kiddos, but I had leftover beef stew, finished it off (sigh).

Came home, flopped around the forum hooha some more until it was time to go to the g/e doctor. Got there on time (1:30), but we didn't get called back until after 2PM, and then we had an inordinate wait in the room before the doctor came in. Then I had to go through my thyroid cancer history with him, and he actually had some suggestions for my rapid transit problem and wants to see me again in a month.

We left the doctor's and hit the road to pick up DS1, and got there just as the kids were being released. I had called and warned them I might be late so DS1 wouldn't worry, but I was glad I wasn't. I hate it when I'm late, even if they're expecting it.

Came home, tried to feed the kids a snack, but they were too excited (DD) or terrified (DS2) about their swimming lessons to want to eat much -- not to mention recovering from that stomach virus. Looked up the directions to the new swimming facility. Got everyone into their suits, and towels and goggles lined up, and got to the new swim place which was a bit crazy -- today was their first day in the new facility! All 3 kids did very well in their lessons, even though DS2 cried a lot. He cries, but he still does everything the teacher asks him to, it's pretty funny. On the way home he said, "I like that pool." We were all laughing, because of how cranky he was while he was in it! Oh, well. I think (hope) tomorrow will go more easily.

We got home a little before 6 but we weren't exactly in a hurry. Tomorrow we'll have to hustle because DD has to get to her kindergarden graduation ceremony as close to 5:30 as possible. At least tomorrow I won't have to buy DD a bathing cap, as I did today -- I knew I would have to, but I foolishly didn't think about it until it was time for her lesson. She's all set now. It was great to see how happy they all were.

Happy, and now exhausted. They were all drooping over their plates at dinner. We'll have to get them to bed asap!

Tomorrow I'm hoping they'll inject the other arm, unless the left one feels a lot better I don't want them sticking it again. As always, I'll just have to wait and see how it goes.

Grand Rounds at Dr. Sanity

This week's Grand Rounds are hosted by Dr. Sanity, using a framing device of many gorgeous DaVinci sketches. My when all you have is a hammer post is grouped with other patient-perspective pieces, including one from another one of my new favorite writers, neo-neocon.

knocking down the Invulnerable Parent



Should we tell our children about our phobias?

In a recent online discussion (no longer linked), I advocated that owning up to our fears can be one way to provide a good role model for our children.

I ran smack into The Invulnerable Parent defense. You know, the one that says we can never be anything but strong and perfect for our children. One woman said, "Moms and dads are supposed to be strong, super-people, invincible."

The problem with this, of course, is that we're not.

Sooner or later, a chink will appear in the armor. We get sick, we get hurt, we die. These things happen to the people we love, and we get sad or angry. Things go badly, and sometimes it's our fault. We make mistakes.

I think Invulnerable Parents raise children who are ill-equipped to deal with the world. They set themselves up as role models who never make mistakes, never feel bad, never need to ask for help.

But isn't it better to teach our kids how to handle negative feelings, and how to make amends and fix mistakes? Isn't it better to model the reality of life which is not that we are perfect, but that we are trying our hardest to be good? Isn't it a good thing to show our kids that we push through our adversities and do what we should, because that is the right thing to do? Isn't it better to teach our children to realize when they need help, and to show them how to ask for it?

Invulnerable Parents ignore all these valuable lessons in a vain attempt to protect their children. I don't think they realize the lessons they are teaching instead.

The first lesson is that parents, and adults in general, can't be trusted, because they don't tell you the truth. In fact, they lie to you all the time. They put up a false front but eventually you'll see what's behind it. They are not the people they pretend to be. How could they be? No one is perfect.

The second lesson is that you are not capable -- not strong enough, not smart enough -- to handle what life is going to throw at you, so you'd better let Mommy and Daddy make all your decisions for you. That way you won't ever have to be afraid, or sad, or angry... until you are, and you'll have no idea how to deal with it. See, Mom and Dad were right! You are incapable of dealing with the real world!

The final lesson is that you're all you've got, so get used to it. There's no point in asking for help with a problem, because everyone lies, and besides, they all think you're an idiot. So it's just you. Have a nice life.

* * * * *

I don't think the woman I quoted above is dooming her daughter to a lifetime of distrust and self-esteem issues. I'm not making any assumptions about her general parenting, but she certainly did get my wheels turning. I do know parents like this. I've seen the havoc that Invulnerable Parenting wreaks.

I'm in a situation where I couldn't be invulnerable even if I wanted to be. My kids know I have cancer, although I'm quite sure DS2, just 4 years old, has no idea what that means. What he knows is that I have a sickness, and that sometimes I go to the hospital. Sometimes I am very tired, sometimes I have to eat differently from the rest of the family. I take a lot of pills everyday. My illness is integrated into our family life. It is part of our reality. DS2 this evening pushed away from me, right above my collar bone, and I had to remind him never to push on my neck, "Mommy has owie places, and that's one of them." Part of me was happy that he had forgotten, even though it hurt. A lot.

Even apart from my illness, I don't lie to my children. There are things I don't discuss with them; I'll tell them they don't need to know that, now, or that it's not something they should concern themselves with at all. DD especially is a little nosey parker, and I'm often left with: I don't need to explain myself to you! I was looking up blog links the other day and she was peering over my shoulder -- Why are you doing that? Why are you on that website? It really was getting on my nerves and I finally told her, "I'm writing. This has nothing to do with you. Please let me work!"

But I didn't lie. It is so important to me that they trust me. I had "the talk" with DS1 the other day; he has been hearing a lot of things at school and we had to make sure he knew the straight story. The etymology of curse words has come up a few times recently, too. We can have those discussions because he trusts me to be honest with him.

I can't imagine a situation in which I would have to lie. I think even if I got the proverbial "6 months to live" prognosis, I'd tell them, but maybe not right away. I'm not a "total honesty" lunatic. That's not right, either, because children shouldn't be burdened with information they can't process. As parents we have to walk that fine line between overwhelming them and keeping them in the dark, but my practice is always to give them the bare bones of a situation, and if they want me to flesh it out for them, I will, to a level I feel they can handle.

I guess it comes down to my own confidence in my kids' abilities. They are so strong and capable, I am constantly amazed by them. I push them, it's true, to try and understand what they are feeling, and to take responsibility for things they have done, or not done. I push them to learn new things and tackle new tasks. We can't learn the limits of our capabilities unless we're stressed; each success encourages us to go further. Failure should be a sign that we need more practice or more patience, but that's a lesson that's hard to learn. If we fail to teach our children how to deal with stress by hiding our own stresses from them, they will surely struggle with daily life. How then will they ever be able to spread their wings and find their own heights?

Update: I edited the introductory paragraphs to remove references that were disturbing to some people. No harm or personal criticism was intended.

idiot spider


What, exactly, was it hoping to accomplish, do you think?



Yes, I am a lousy housekeeper. But the fan is used nearly every single day. I'm thinking this was the result of one very productive over-night session. It's a terrible picture, the flash kept washing out the web entirely. I really have to work on my camera skills.

Monday, May 30, 2005

hurtling towards the abyss

Time has had a strange elasticity lately, some hours stretching inordinately, other days passing by in a blink.

Today was such a day, not helped by my sleeping in until 11. Yeah, I was running on several days of short sleep, but I had a 2-hour nap yesterday and got to bed at a not unreasonable time. I was surprised when I finally drifted up to the surface and saw what time it was.

Of course I was starving by the time I made it downstairs, but had to wait an hour for the meds to be absorbed. Ah, the perils of over-sleeping.

This week is so over-scheduled it's not even funny. Tuesday: Thyrogen, doctor's appointment, swimming lessons, Thyca meeting(?). Wednesday: Thyrogen, swimming lessons, DD's kindergarden graduation. Thursday: scan dose, DD's last day of school, swimming lessons. Friday: scan, DS1's last day of school, swimming lessons... RAI treatment?

Every time I think about the scan on Friday, the bottom falls out of my stomach. I honestly do not want to know. I wish that my not-knowing could push whatever is into the realm of is not. I know that it can't, so I will follow this path until I know, and then -- well, we'll see, right?

Sunday, May 29, 2005

trapped

That lesson I got the other night, about not staying up too late because you never know what's going to happen?

Yeah, I did it again -- stayed up late to watch the Daria movies -- and got up early because both DD and DS2 have come down with DS1's stomach virus.

One of the benefits of being up early is getting things done early. I've already finished the laundry -- and it's even folded and put away! That's a near-miracle.

But I'm exhausted, and we're stuck here, and the two little ones, while mostly over the really nasty parts, are still feeling quite peaked. We probably won't do anything tomorrow, either.

It's just as well. This coming week is going to fly by.

my face hurts, round 47

All of my salivary glands are tender and a bit puffy. Nothing as bad as the worst attacks I had in February, when the swelling in my parotids was remarkable (as in, DH asking me, "Is your face bothering you now? Your cheek looks weird"), but still, this is the most discomfort I've felt in several weeks. All the glands under my jaw are very puffy... I look like I'm developing a wattle. I hate that look!

When I had my brief sojourn with the low iodine diet (LID) at the beginning of May, I had a few problems. Now it seems the longer I stay on LID, the worse these problems are getting, and it's hard for me to think that it's just a coincidence.

I've also got some hypo symptoms, like itching. I'm curious to see what my TSH is when this process starts on Tuesday. I wonder what it would mean if I went hypo just because I went on the LID?

Saturday, May 28, 2005

crush

I have a movie-star crush on Gene Tierney. I've blogged before about The Ghost and Mrs. Muir, and just recently it was on again -- it inspired me to set up a TiVO wish list to look for other movies she appeared in.

So far, I've see the charming, flimsy Heaven Can Wait, which bears no resemblance at all to the Warren Beatty film of the same name. It starred Don Ameche looking frankly incredible, I had never seen him as a leading man before. And Gene was the typical Gene-character, luminous, beautiful, perfect.

Next up was Dragonwyck, with Vincent Price as an insane landowner in the NY Hudson Valley in the 1840's. Again, Gene has a typical role, but it was very cool to see her Miranda finally realizing what a man she had married, and arguing with him about God, or anything, for that matter. She sparkled.

Currently sitting on the TiVO? The noir classic, Laura, which I hope to get to tonight.

I'm really enjoying these old movies on so many levels. It is interesting to see how fashions, customs, and morals have changed since they were made. But I get an immediate joy from watching how beautifully put-together these films are. So far I haven't seen one tacky or flimsy set -- these are visually beautiful films even when the plot contrivances and the dialog approach ludicrous.

There was a point in Dragonwyck when DH asked me, "Are the farmers coming after him with their pitchforks now?" A moment later, Vincent Price's character asked the same question. I commend the screenwriter for recognizing the situation was perilously close to cliched. He veered away from it with skill and humor. Generally I've seen this skill and humor in all of Gene's movies, but I'm sure she must have made a few clunkers over her extended career. It may take some effort to find them, though!

I've looked over Gene's films and I know she plays against type in at least a few. I hope I get to see them eventually -- it will be so odd to see this nearly-perfect woman play someone who is clearly not.

my daughter, the _itch

She's gorgeous, but she's a harpy!

We're working on it. If this nasty-toned, demanding creature doesn't get her act together, she's going to find herself shunned by everyone but the cat.

Thursday, May 26, 2005

blurry

I took the kids to Border's after we picked up DS1 from school, and we had a nice visit there. I skimmed through a half-dozen new knitting magazines and was appalled at how hideous the majority of the designs were. Shapeless sacks (with interesting patterns and textures) or tiny halter-y things -- there were very few nice-looking projects that, you know, a human could wear.

I drank a cup of Republic of Tea decaf Ginger Peach, and it was good. I put some honey in it. It wasn't as good as rEvolution tea, but it was still good, and I didn't feel (too) deprived not being able to have any kind of a snack.

I gave the kids a cheap thrill by taking the van through the car wash after we filled up the tank at Sam's.

We got home and I puttered around until DH got home and then I just crashed. I probably slept for about 40 minutes, and when I woke up, my eyes wouldn't focus.

My eyes have been very dry and gritty lately, I've been using my Systane drops 3 or 4 times a day, and even need them before I go to bed or my eyes bother me. So I walked around with everything looking blurry and fuzzy for a while and then finally put in some drops, and after another five minutes or so things finally cleared up.

I've never needed glasses or had any vision problems, so it was very strange for me not to be able to focus. It reminded me of the time DS2 scratched my cornea when he was just an infant (unlucky poke with a baby fingernail), and all the lights had haloes for a few days until it healed up. This was like that, only way worse and in both eyes. I couldn't have read anything smaller than 18 point type, I think. Yikes.

I'm wondering if this is related to the ongoing flare, or is a side effect of my RAI, or what? Maybe it's not related to anything and I just have dry eyes now, too, on top of everything else. My gut feeling is that it's a delayed RAI side effect, since my salivary glands are acting all weird again, too.

It's manageable, but annoying. I'm used to this kind of thing. I'll mention it to the endo when I see her next, which should not be too long from now.

disgruntled

I'm in a fine mood now -- the kind of fine mood Maureen O'Hara was in with John Wayne for the majority of The Quiet Man -- but it doesn't surprise me at all.

I am upset about the scan. More precisely, I'm upset about needing the scan. In other words, I'm pissed that I have cancer.

Yes, again, or rather, still. Apparently I'm still not used to the idea.

Also, scared about how bad it will be, nervous about treatments and side effects, and wondering if I'm going to have to argue with my doctors before I'm satisfied with the treatment plan they present. Nothing like anticipating stress to lighten the mood, huh?

Time for chocolate!

when all you have is a hammer...

...everything looks like a nail.

I understand that human nature dictates that we always think that our professional solution is the right one. It doesn't surprise me that my surgeon wants to operate, or that my NucMed doctor wants to give me another round of RAI.

But I have to weigh this factor in deciding what course of treatment I'll follow. And since I'm already in "off label" territory as far as Thyrogen treatment is concerned, I'm not exactly sure where I'm going to end up.

Today I called the NucMed department and got my schedule for my injections, tracer dose, and scan next week. The plan is to get injections on Tuesday and Wednesday, tracer dose Thursday, then the scan Friday.

That all sounds OK, but then the scheduler continued: We'll also treat you on Friday if the scan is positive.

Wait just a minute, there, Missy! What do you mean? First of all, treatment means going into isolation for at least 3 days, and it's not something I can just jump into.

Second, even if the scan is positive, will another round of RAI now be the best way to treat it? In my discussions with my endo, she talked about getting the WBS and then following up with CT or other scans to get good localizations on whatever is there, and then determining a course of treatment.

However, the Thyrogen is short-acting, and if I don't get treated Friday, I will have to go hypo (off thyroid meds for at least 4 weeks) before I could be treated, or I could try to request another round of Thyrogen but it's likely that the insurance company would deny it.

There's also the fact that Thyrogen isn't even commonly used for people who have not yet had a "clean" (that is, cancer-free) scan, and this is my first follow-up and we're about 100% sure that this scan is not going to be clean. This the "off label" usage I mentioned above.

But actually treating me while on Thyrogen stim is even further off-label! The Thyrogen Patient Information Kit (pdf) even says, Your thyroid hormone therapy must also be stopped if your tests show that you need 131I treatment.

I'm sure there are studies out there showing that it can be effective, and I know approval for this usage is something that the drug manufacturers are pursuing, but that doesn't mean I want to be a de facto uncompensated test case.

In addition, I'm not convinced that RAI is the way to go if it's in the lymph system, which is what my first WBS showed: multiple nodes in the neck and chest. At the time of that scan, I had just been nuked with 206 mCi of RAI, and the hope was that the radiation would clean out those nodes and anything else that might be lurking around. On examination at the beginning of May, my endo found at least 3 suspicious nodes in my neck.

Do I think I still have cancer in my nodes? You bet. Do I think the RAI can get it out of there? Honestly, I know there's a chance that it might, but I also know that historically, surgery (or ethanol ablation) is a much more effective method of eliminating cancerous nodes.

If I have RAI next Friday, they won't do anything else to me until the fall, at least 6 months out. On one hand, that could be a good thing as I could enjoy my summer. On the other hand, I have no confidence that further RAI is going to be all I need, so I'll just have surgery hanging over my head if they do the RAI now -- and the Thyrogen-stim RAI treatment still has me shaking my head. What to do, what to do?

No decisions can be made until after the scan, obviously. But I'm not going blindly into an off-label, less-than-effective treatment just because my NucMed doctor has a hammer and sees my thyca as a nail.

Wednesday, May 25, 2005

further RotS musings (geek alert)

Revenge of the Sith, and Star Wars in general, is still enjoying a pretty high media saturation rate these days. My home-sick-from-school son watched Episode IV today, and I have to say I enjoyed catching pieces of it here and there as I puttered around doing whatever it was I did all day. Ep IV was fun, whereas all of the prequels have taken themselves way too seriously.

Which is a fine segue into my more recent musings on RotS -- I, too, am taking this stuff too seriously, but I've had this little nagging feeling for a while, and I finally managed to tease out why.

I knew that Lucas was hewing pretty closely to the Campbellian mythic archetype; nothing wrong with that -- it's coming through loud and clear in my latest read Eragon, too. There's a reason archetypes are archetypes; they resonate. I don't have a problem meeting the Hero with a Thousand Faces yet again.

What I do have a problem with is the whole prequel plot. We've got a young man with extraordinary leadership qualities apprenticed to a supernatural/religious order. He falls in love with a politically powerful, beautiful young woman, but they have to keep their marriage a secret because the Powers That Be would not approve. The woman gets pregnant with twins, and delivers a boy and a girl, but dies in the birthing. The hero, gifted with foreknowledge and an ability to read minds, had no idea that his wife was pregnant with twins! Upon hearing of his wife's death, the hero goes mad. He suffers major disfigurement. There's a huge war on, millions upon millions of people die across countless star systems. Later, the son (with some peripheral help from the daughter, but it was mostly the son) helps to bring about the revolution and restore "balance" and peace to the Empire.

Those are the main plot points of Revenge of the Sith. So, what's my problem? They are also the main plot points of Frank Herbert's 1965-1969 Dune series, written well before George Lucas ever dreamed up his little rebels-that-could. Sure, sure, Paul Maud'ib wasn't quite as psycho as Darth Vader, but it's all there:

Anakin => Paul
Jedi => Bene Gesseret
Padme => Chani
Luke & Leia => Leto and Ghanima
and even:
Darth Vader => Maud'ib (who inspired jihads)/The Preacher (who was disfigured)

Is this such a stretch?
Ever since Return of the Jedi, when Vader uttered the infamous "So, you have a twin sister" line, I've had this vague feeling of disgruntlement about this series. Seeing it all plunked down with excruciating exposition in RotS finally clarified it for me.

Maybe everyone else has known about this forever, but I've never seen it discussed before. Maybe I'm just not geeky enough? I still really enjoy Episodes IV-VI, but with this realization the prequels have fallen even further in my estimation. They're not just overblown, badly written, and poorly directed -- their famed story, supposedly strong enough to sustain us through all the other flaws, is nothing more than a watered-down rip-off of a true classic.

and it continues

The rest of yesterday didn't get any better. Everyone dropped something or made at least one mess that needed to be cleaned up, it was just that kind of day.

In an attempt to flee this stark reality, I picked up DS1's new book Eragon, and read the first 200 pages of it, and consequently I got to bed around 1:30 or 2AM. Since I spent the last hour-and-a-half of that lying on the couch reading, I figure that almost counts as sleep time, right?

I have learned before that whenever I stretch myself too thin, circumstances arrange themselves to demonstrate to me that it's a really bad idea: you never know what's going to go wrong, and you'll wish you had those energy reserves you squandered away reading a junk fantasy novel at 1 in the morning.

Last night apparently I needed a refresher course in this life lesson, because at 3:30AM there was DS1 at my bedside, complaining very convincingly that his stomach was churning and he felt sick. As an experienced puker, DS1 generally knows what he's talking about regarding these things, so I grabbed my wastepaper basket and held it for him.

Poor kid. He was up about 4 more times between then and 7:30, at which point we both gave up the idea of getting some sleep. Fortunately that was the last time he actually puked so the day went by very peacefully. I think this marks a milestone in that no bedclothes had to be laundered over the course of this illness. (I'm knocking on wood as I write this, because I don't want to jinx myself.)

So last night I didn't get much sleep at all, but it didn't matter too much anyway. We hung out all day. I finished Eragon. I cut up the chicken for dinner and put on a pot of soup with the backs and wingtips and various other inedible parts. (heh) It has been simmering for about 7 hours now and smells fantastic. I'm not exactly sure what I'll use it for, but it certainly won't be wasted. I'm thinking of making chicken masala, and I'm pretty sure that needs chicken broth.

I'm too exhausted to care about much. I learned one other lesson today, though. It's fine to lie completely slumped down on the couch so my lower back has no pressure on it whatsoever. It's also fine to snarf down some really good organic dark chocolate. It's just not a good idea at all to do both at the same time, especially when wearing a white t-shirt. (It's now covered with spots from the chocolate crumbs. Hey, that's why we have bleach!) That organic dark chocolate is a lot more crumbly than my usual bittersweet, I guess.

Live and learn.

Tuesday, May 24, 2005

that kind of a day

I actually got to bed at a reasonable hour last night.

This morning I woke up at 5, used the bathroom, and went back to sleep.

8:30 rolls around and I struggle to the surface, only to be sorry that I bothered when I was finally awake.

You've heard that expression, I felt like I was hit by a truck?

Yeah, that was me, this morning. Everything, but everything, hurt. If you've never experienced this feeling, there's no describing it. If, say, you're sitting at a lecture and you start to feel a little twinge, you can usually cross your legs the other way or stretch out your arms in front of you to get the kinks out. This morning, it literally did not matter what I did, it hurt.

Then DS2 comes in, very cheerful as usual. He was dressed, all by himself! Amazing. I asked him about breakfast, he had had "just one piece of toast," so could he have, "poached eggs and more toast?" Sure, just give me a minute (an hour, a day...) to get up here...

I hauled myself out of bed, took my meds, took out my retainer and cleaned my teeth, got dressed, came downstairs and made him eggs and toast. And then...

clunk

Uh-oh. An entire cup of milk up-ended onto the table, his breakfast (fortunately, the toast was spared, and the eggs were almost gone anyway), DS1, his chair, the floor... (whimper)

But: "No crying! Remember the saying?" I mop it all up, give him the choice: change first, or finish eating and then change? He elects to eat his toast and then change.

I putter around some more, waiting for the hour since I took my meds to elapse. We have errands to do! Finally I can make myself a protein shake and we can be out the door... I open the cupboard and lift the container out by the lid, which promptly pops off in my hands. The container falls the foot-and-a-half to the floor, falls over, and rolls.

I admit, I just stood there watching it until it stopped, a trail of chocolate-flavored protein powder in its wake. Fortunately there wasn't all that much left of it, else it would've been a much bigger mess...

The stick vaccuum got most of it up, but then the battery died and I mopped up the rest of it with paper towels. (sigh)

Errands, now. Trader Joe's went fine, although I'm sure I forgot something. Then, Sam's Club, except now I'm feeling very unwell, and debate whether or not to go home. Then it became clear that the best thing to do would be to stop and use their bathroom, because home was definitely too far away.

(TMI warning)
I felt like my innards had been pureed and were now falling out of me.
(end TMI warning)

Then there's the added stress of having DS1, 4 years old, with me. He's all happy and stuff, he loves going out and about, and he thinks public bathrooms are cool. He is fascinated by the new, fully automatic bathrooms at Sam's Club. I just appreciate that they are clean, and frankly just that they exist at this point.

So he's all, let's go, let's go, and I have to explain to him that I'm feeling pretty sick. His nonchalance was remarkable. It was exactly the same as if I had told him, "I need to finish reading this," or something similarly innocuous. I guess that's a good thing(?), the kid not realizing that his mom wants to just curl up in a ball and whimper?

So I get through that and we do speed-shopping and then stand on line to get cookies for the kids at the cafe, and we're late to get DD but she doesn't mind because, you see, we have the cookies.

Come home, put away the groceries (chicken leaked! ick), get the kids lunch, feel like keeling over.

Then I got a call from my gastroenterologist's office, an automated message actually. It's time for me to schedule a follow-up appointment. I don't want to. The way things are going lately, he'll schedule at least 2 invasive procedures to try and figure out what's going on, both of which will be inconclusive or reveal something else dreadful for me to deal with. No thanks!

Well, I guess I'll think about it.

Grand Rounds at Iatremia

Michael Chaplin has done a bang-up job of putting together this weeks Grand Rounds.

He intro'd my HIPAA v jury selection committee piece with a great 1984-esque quote: War is peace. Freedom is slavery. Ignorance is strength. HIPAA is privacy. -- Dr. Orwell

I admit that I got a huge kick out of the presentation because I recognized most of the quotes, and appreciated how he tweaked each of them to give them the right "med" perspective.

Monday, May 23, 2005

flare

My rheumatoid arthritis (RA) is acting up lately. That means my hands, feet, and hips (mostly) throb quietly all day at around 4 on the 10-point pain scale. The constant nagging pain is exhausting and gets in the way of all sorts of things. My hands aren't quite useless but I find myself dropping things, not to mention putting DD through an unnecessarily rough time when trying to put her hair up. For some reason, the cat's prescription bottle has become completely impossible to open, even though my own prescriptions remain accessible.

When I'm in a flare (that's what it's called when a chronic disease like RA rears its ugly head), there are two main questions that keep nagging at me: why is this happening? and how long will this last?

I think I have a handle on why this is happening. I've been taking minocycline, the only antibiotic prescribed for RA (and no one is exactly sure why it works) 2x/day now for about a year. One of the great things about it is that it's cheap, especially as I can get a 3 month supply from the mail-order pharmacy for less than $20. You can't beat that.

Except... I let my supply run down and didn't realize I needed to get a new prescription, which means, because this is mail order, having a new prescription physically in hand to mail to the pharmacy. Arg! I finally arranged to do all that, but I knew that it would take at least a week, maybe two, for the new supply to arrive. So I rationed myself, one a day, until the new prescription came in.

Happily, I only had go on the half-dose for 5 or 6 days, but on the third day I was already starting to feel it. I've been back on the full dose for the better part of a week now, but it's not getting any better -- if anything, it's getting worse.

My weight was up to 132 pounds this morning, the first day I've been over 130 that wasn't post-operative in I don't know how long. I have no doubt as to where the weight is, as my hands and feet are swollen -- the rest of me is, too, but it's not as noticeable.

I'm thinking about what I've been eating, which has been more relaxed than usual, given the pending LID. I haven't been exercising, but then again, I rarely exercise, so that's nothing new. I've had periods of lazy decadence before, though, and none of them have triggered a flare.

The last thing I can point to is that I've been really, really bad about staying up too late. I've had a few 4AM bedtimes recently, which is just too stupid for words. It's my quiet mechanism for freaking out, and it's probably the most destructive thing I do to myself. Naps just can't make up the difference in lost sleep hours.

On the other hand, I've been through similar freaking-out-staying-up-late cycles before, and they haven't triggered a flare.

Maybe it's the combination of everything? It probably is, but there's no way I'll ever get a definitive answer.

So now I'm doing my best to get out of this thing: taking my meds 2x/day like a good girl, and getting a hold on my ridiculous excesses, diet-wise. The one thing I've been failing at is getting to bed at a decent hour, but tonight is another opportunity.

Diet, medications, exercise, sleep -- those are things I can control, but there's no assurance they'll work. I've had a really good year, RA-wise, even though I've had surgeries and radiation and all the accompanying psychic trauma. This particular flare came on fast, like I fell into a deep hole, and it is taking way too long to climb back out again.

The timing is lousy, but that is no coincidence. If I weren't stressing about the cancer stuff, would this be happening? Is there any point in asking questions like that?

No -- and there's still no word on the schedule for the Thyrogen shots and body scan.

coming back to Terri

Yesterday, Ann Althouse linked to Joan Didion's piece in the NY Review of Books, The Case of Theresa Schiavo. It is a long, impressive article which highlights many of the peculiarities of the case.

This morning, Amy Wellborn has linked to it as well. Having thought about it this a great deal overnight, I left this comment:
Ann Althouse also linked to Didion, so I read this great but ultimately disappointing piece yesterday. I was disappointed because it was nearly entirely a straightforward (and very fair) rendition of the facts, with notations along the way of how certain facts were constantly being twisted or just left out altogether, but it never moved beyond what happened to examine why, and what should happen moving forward.

One factual omission that Didion herself is guilty of is in not pointing out that the infamous Republican "talking points" memo was not produced by the leaders of the party, but rather was written by a low-level staffer and through a ludicrous (but not malicious) chain of events it was circulated among a few of the party leads. It was far from the "master plan" that the media made it out to be -- but in her glancing references, Didion did not refute the conventional wisdom that it was.

Finally the article just petered out with speculations about how much or how little this case would affect the next election cycle. I would have liked to see what Didion's take on the whole situation was -- the column was published in a review, after all, and one reads a review to hear the reviewer's opinion. She was willing to comment on various events throughout the case -- for example, the unnecessary removal of the feeding tube, rather than just the cessation of feeding -- but punted the opportunity to note that Terri's death was essentially murder by court order.


At the time, I felt that there were many opportunities to help Terri that were denied. Now in retrospect, it becomes even more obvious. Whether or not Terri was beyond help will never be resolved now. May she rest in peace.

Sunday, May 22, 2005

the interview: next 5 questions

I'm finally getting to posting my questions for the next volunteers in this blogging adventure -- so TeaFran (and anyone else who's game), here you go. Post to your own blog, send me the link (quieti-AT-cox-DOT-net), and I'll update this post with a link to your replies. Have fun!

1. What was your favorite subject in school, or if you didn't have a favorite, the one you minded the least? Did/does this subject have anything to do with your occupation?

2. Of all the places you've lived, which did you like the least, and why?

3. When is the last time you had ice cream? What kind was it?

4. What things are worth having enough that one should be willing to go into debt to buy them?

5. Is there a book or series of books that you feel made a significant impact on your life? What book, and why did it affect you the way it did?

Update: Well, that was quick!
Here are T's replies to these questions, and here's a little follow-up post inspired by his wife. Lately T has been toodling around with his new digital SLR and posting some great New England shots. They're well worth a look: click Stealth Fish and scroll away.

HIPAA v the jury selection committee

Guess who loses?

I recently got a summons for jury duty, with my show-up date smack in the middle of my latest round of cancer testing. Since this testing involves injecting me on several consecutive days with a very expensive drug, and then conducting blood tests and whole body scans, it is very difficult to schedule. And since my cancer was invasive, this follow-up testing is very important, and not something I want to defer because of a jury summons.

I could defer my jury duty to some time within the following four weeks, except that I also have in hand paid-for unrefundable plane tickets which place me 2,500 miles away from the end of June until the beginning of August. I may end up not using these tickets if I need surgery and/or radiation, which, as I have mentioned at least a thousand times since the beginning of May, my endo thinks is "likely".

Given these circumstances, in which the usual deferrment would not be suitable due either to my absence or surgery/radiation treatment recovery, I sought an excuse.

The juror affadavit form requires a doctor's note if you are seeking an excuse for medical reasons, so I called the endo's office and they sent over a nice, generic note: (paraphrasing) "(me) has been our patient for several years and her condition makes her unsuitable for jury duty at this time. Please excuse..."

Wheels of juror selection having finally turned 'round, I received last week a postcard saying your request to be excused does not meet statutory requirements. In other words: request denied, show up or get in trouble.

I flailed around the automated phone system trying to get a deferred date far enough out that both my treatments and/or my vacation would be over, but had no luck. Finally, I found a number to speak to an actual human. She was kind and explained to me that my excuse request was denied because it was not specific.

I replied that my medical condition is none of her business. She agreed. She did assure me that they don't keep any of this information on file, it goes immediately into the shredder, but that doesn't make me feel any better. Some random flunky in the juror selection office is sitting on a goldmine of potentially damaging health information, because the bureaucracy doesn't trust that we're not trying to skive* off jury duty. The kind woman offered no remedy, but suggested I contact the legislature.

I know a lot of people find jury duty to be obnoxious, but I would think that the legislature would at least trust that people's doctors would not write them excuse notes that aren't warranted. I would expect a doctor to have the guts to say, "I'm sorry, Mr. Smith, there's no medical reason for you to be excused, so I can't give you a letter."

Then there's the HIPAA aspect of this issue. On the one hand, doctors have had this entire new, huge layer of bureacracy imposed on them to protect patients' healthcare information. On the other hand, here is the legislature insisting that the jury selection committee needs to know exactly what's wrong with you, and then they will decide whether or not you are fit for jury service.

I rather think my doctors are much better qualified to make that decision, and I think it's outrageous that current state regulations require me to disclose confidential health information in order to be excused from jury duty. Maybe when I'm done with this upcoming visit to CancerLand, I can write a few letters and see about getting something done about this.

(*) NOTE: Skive is British slang, roughly equivalent to cutting class, or more specifically, feigning illness to cut class. The term was brought to my attention in Harry Potter and the Order of the Phoenix, in which enterprising young wizards Fred and George Weasley perfect their Skiving Snackboxes. One half of a toffee makes you deathly ill, the other half cures you -- of course they were very popular among the students.

the loveable rogue

We saw Sideways tonight, from the pay-per-view.

May I just take a moment to rail against the fact that PPV movies are rarely shown in letterbox? I'm paying (not much, granted, but I am paying) to see the entire movie, not just the parts that fit into the pan-and-scan ratio. It's very annoying, and there are more than a few scenes in Sideways where the pan-and-scan is distracting to the point of criminality. Wake up, movie broadcasting people! Pan-and-scan is evil!

Ahem. So, Sideways. I'd say, "meh," but I did get a few laughs out of it. And I did come to care for Paul Giamatti's character (Miles). But the topic today is more Thomas Haden Church's character, Jack -- the lovable rogue.

I want to hate Jack, but mostly I just find him distasteful. I can't work up that much emotion, either negative or positive, towards him.

See, my idea of a lovable rogue is someone like Han Solo, who will pull the trigger first so Greedo doesn't grease him in some sleazy bar on Tatooine, and is certainly not above smuggling. But once Solo fell for Leia, he didn't leave town for a week to go bang every pretty girl in the quadrant before they finally got married.

Jack was repulsive and manipulative and I hated how he turned on the charm and had women falling at his feet. The thing I hated the most about it was how realistic it was, and how everyone let him get away with it. Sure, he supposedly has a "moment" where he realizes that if he loses his fiancee, he'll have nothing, but in all honesty, I couldn't help thinking, "What a load of crap! He'll forget all about this by tomorrow morning!"

Movies like Sideways perpetuate the idea that loveable rogues are good people to have in your life, when nothing could be farther from the truth. They use people, and if you do not care for whatever their passing fancy is on a particular day, they'll just leave you stranded. In this respect, Sideways is something of a public service announcement, because it totally nails the rogue character and how shallow and obnoxious they typically are.

At the same time, Sideways continues the Hollywood tradition of portraying bad boys as being the most fun and therefore somehow desirable. Nothing like having it both ways: Yeah, these guys are horrible people, really, but they're sooo worth it!

Movies are not real life. My own Jack-like college friend got me "back in the game" many years ago by fixing me up with a psycho from her work group. She neglected to mention the psycho part, well-known to her for several years, electing to allow me to discover it for myself. Yikes! In her world, "Hey, no biggie! It's not like you married the guy, no harm done, right?"

Well, yeah, but I could've done without the constant stream of post-breakup caustic messages, just as Miles could've done without Maya thinking that he was a liar and a cad.

That's what "lovable rogues" do: they put you in situations that you would never get into if it were up to you, but it never is. You just have to figure out a way to clean up the mess and move on.

apparently universal

Why is that frogs are always noisier than common sense would seem to dictate? Even in Poland, they are loud enough for Nina to make note of it.

Friday, May 20, 2005

only once

I like Ann Althouse's new "meme" so much that I couldn't help but come up with 10 things of my own -- each is something that I have done only once in my life, so far. They are in no particular order, either chronological or significance:

1. Bought a used car.

2. Converted to Judaism.

3. Had a date with a guy who hadn't yet figured out he was gay.

4. Been to DisneyLand.

5. Had my passport renewed.

6. Jumped out of a moving car.

7. Took a drag from a cigarette.

8a) Been offered cocaine.
8b) Refused cocaine.

9. Fell asleep at a rock concert.

10. Had an epidural.

FunBrain's lapse

Last night, DH made the rounds, shutting down all the computers before we headed off to bed. I was doing my own puttering and not paying any attention until he asked me, "Have you seen this?"

This was some content on an educational website my kids learned about at school, called FunBrain. There's a lot of advertising but there are also skill-developing games in math and reading that the kids enjoy. I gave it a once-over when they first told me about it, and since they use it at school, too, I didn't give it another thought. I figured the content would be OK.

(You can guess where this is going, can't you?)

DH was reading The Diary of a Wimpy Kid, day 234. It wasn't something I was familiar with, so I sat down to read it. It was a nasty surprise to read, It looks like Mom isn't going to let Dad off the hook on this underwear thing.

There's a plotline underway in which the Mom found a pair of leopard-print panties in their laundry. Obviously they're not hers, and she thinks her husband is having an affair and is making him sleep on the couch.

This is suitable content for an elementary school website? In a word: NO. What is wrong with these people?

Here's the email I sent off to them, although I'm pretty sure it's going to technical support and I'll have to figure out how to contact the people in charge of content. I hope the tech support people kick this upstairs, because I am pretty ticked about it.
I am writing about the April 27 and April 28 entries in "The Diary of a Wimpy Kid."(link)

I was disturbed to see the story line involves the mother finding a pair of women's underpants that are not hers mixed up in their laundry, and blaming the father for them being there.

I do not think that this is suitable content for grade-school children. Second graders should not be subjected to this kind of sexual situation, especially regarding marital infidelity.

If this is being played for laughs, I believe that there are many other subjects that could be mined for a lot more humor. Fathers who are sleeping on the living room couch for being caught out in an affair just are not funny.

I was very disturbed to see this content on your site. I have previously had no problems with letting my children use these resources, but now I feel I have to review everything in advance. You have a responsibility to your core audience to prevent content like this from appearing on your site, and I think you should drop this storyline from the Diary before it goes any further.

Is this censorship? You bet. I have no problem asking that inappropriate material be kept out of sight of my children. It's my job as a parent.

Please contact me as soon as possible with how you address this issue.


The complaint has been filed -- I wonder how long it will be until I hear back from them, and I wonder what kind of resolution they will propose.

Thursday, May 19, 2005

mental vacation

Tuesday I re-read Harry Potter and the Goblet of Fire. Actually it spilled over into Wednesday, but when I finished it in the morning I just kept right on with Harry Potter and the Order of the Phoenix, which I finished in the wee hours this morning.

That was fun. I needed the break from reality. I'd guess I did at least 18 hours of reading over 2 days, and it may have been more like 20. Yes, I am insane... but on those 2 days I limited my computer time to checking eMail in the morning, and I didn't watch any TV at all. It was lovely.

Today we all went to the 4:20 showing of Revenge of the Sith. I knew I wouldn't be on-call to do much with the kids today because of the movie, that's why I could afford to be up stupid-late reading a book I have in fact already read twice before.

ROTS wasn't any more dreadful than I expected it would be. Going to the movies with the kids and DH was a treat, they always get so excited. It was terrific fun to watch DS1 watching the movie. DS2 sat on my lap for the duration which was at times excruciating, but I think if he had been in his own seat he would've been too scared. As it was, there was one scene where I covered his eyes, and he didn't mind in the least.

Today didn't go as easily as I'd hoped, since my request for a jury duty excuse was denied and I had to jump through a few hoops to get it rescheduled for September. I also had to deal with some Thyrogen/insurance stuff. It's looking like the dr's office will get the Thyrogen in house sometime next week, and I should have my scan the week after that, but it's still a bit up in the air. DH has classified the entire cadre of people responsible for getting this done as "Keystone Kops" but I don't think that's quite fair. I do know that if I didn't stay on top of them, nothing would be happening still.

Since I'm more realistically hopeful about the timing of the scan this time, the plan is to start back on the LID on Monday. That means seafood and dairy all weekend long! The coconut shrimp at Rockfish are calling my name.

Tuesday, May 17, 2005

Grand Rounds at Galen's Log

Galen's framing device this week totally cracked me up.

This edition of Grand Rounds sees me camping out by Radiology...

religion interview

My niece, who attends Boston Latin High School, is doing some kind of project or report on religion, and had to interview someone. Here are the questions she sent, and my answers. I'm not sure if she was given the questions or came up with them on her own. I admit that I more or less tossed off my replies; I certainly could have done more research, but I'm pretty sure this was adequate for her purposes.

I think it's kind of funny that I've been interviewed twice in the past week, given that I don't think I have ever been interviewed before at all!

Some of my answers are not at all politically correct, but these are my opinions and feelings, and reflect what I've learned. Here goes:

1. What section of the Christian religion do you practice?
Roman Catholic

2. How often do you pray?
Several times a day by myself (no specific count). Twice a day with my whole family (grace before dinner, prayers before bed with the children), once a day with my husband.

3. How often do you go to church?
Once a week, plus holy days of obligation, like Christmas, New Year’s Day, the Assumption, etc.

4. What would you say is the best lesson your religion teaches?
God loves everyone, everyone is worthy of love. Love your neighbor as yourself.

5. What would you say you most disagree with about your religion?
I have had more disagreements in the past with the RC Church than I do now. I’ve studied a lot more and at this point there isn’t anything that I can say I disagree with as far as the teachings of faith go. I have huge problems with how the sexual abuse situations were allowed to take place and then were covered up, that was just horrendous – but that is not a criticism of the faith or the religion itself, it is a criticism of certain people acting ~supposedly~ within the Church, when in reality they were far outside the teachings of the faith.

6. What is one thing about your religion that affects you in daily life?
The knowledge that I’m not alone, that I can ask for help if I have trouble.

7. Which do you praise the most from the Bible?
I’m not sure what you mean by this question. There are many Biblical passages that are beautiful, and there are some stories that I really love just because of how they are told. I like the description of love in Paul’s first letter to the Corinthians. I like the Gospels. I like the Psalms in the Old Testament.

8. How often do you feel you pay homage to your religion?
I never pay homage to my religion. I give honor to God through the practices of the faith, but it is not the religion which is revered.

9. Can you tell me one story from the Bible that you remember having a strong impact on you?
The parable of the Prodigal Son, because I was a prodigal daughter.

10. Are there any people/stories in the Bible you show serious doubt in? If so, which story?
I don’t, and Catholic doctrine doesn’t, take the entire Bible literally, especially the Old Testament. It is clear when Jesus is telling stories such as the parables that he is not speaking of literal people, times, or places, but is using broad brushstokes to paint a picture that will get his point across. I’ve been very interested to watch the shows on the History Channel going over the history of the Bible, describing how certain events could have happened, and then how they may have changed through the oral tradition that existed before the books were written down. So if you’re asking me do I believe that every word in the Bible is factually, historically true, I’d say no. But if you ask me does the Bible contain the revealed word of God, then I would say yes. Does that answer the question?

One other thing, our understanding of certain things in the Bible changes with our understanding of the world and natural law. We are only human and trying to understand the Divine is a worthy effort but not assured of success. So things change, as our understanding of the world grows.

11. Would you consider yourself an adamant Christian?
I went and looked up “adamant” so I could be sure to answer your question correctly. Am I impervious to pleas, reason, or doubt concerning my faith? Probably not, but maybe, at this point. My spiritual journey has been long and convoluted, passing through agnosticism through Judaism and then back to Catholicism. DH recently completed the Rite of Christian Initiation for Adults and became Catholic, and through his classwork I had an opportunity to review and relearn a lot of things about Catholicism that I had forgotten or never knew. It all makes a lot of sense to me, and I’ve read/see/heard many arguments in favor of the faith, against the common arguments we hear against it. It has been an interesting year.

That doesn’t mean I’m not willing to listen to other people’s (respectful) opinions, though. But at this point I can’t imagine any argument or event that would change my mind.

12. Have you ever questioned your faith?
Sure, many times.

13. What could bring a person to question the Christian faith?
The same things that bring a person to question any faith. Usually it’s a personal tragedy or a tragedy befalling someone they love. There doesn’t seem to be much order or justice in the Universe, and this is the kind of thing that makes people ask, “Why?”

14. Do you think Christianity is the only relevant faith?
Relevant to what? I certainly think that Christianity is one reason that Western Civilization has advanced as much as it has. It appears in practice to be the faith most compatible with freedom. That’s not to say that predominantly Muslim or Buddhist or atheist countries can’t be free, it’s just that in reality, they aren’t. I can’t lump Hindu in there because, first of all, I don’t know anything much at all about it, but secondly, India I think is mainly Hindu and it’s one of the largest countries on Earth, with a huge population.

15. Do you think Christianity is the best religion, in your opinion to raise your children on?
My children are all being raised Catholic, in my opinion, it’s the best.


16. If your child ever did anything that went severely against Christianity, would you condemn him or her?
No… this is kind of funny, actually. DS2 threw one of DD’s toys across the family room today, and I said to him, “Be nice to Teddy!” in a stern voice. He started to cry. I explained to him that I will always love him, even if he does something that’s not very nice. If he does something that’s not nice, I have to teach him to behave better, but I will always love him.

So: I will always love my children, even though there are times when I don’t love what they are doing. They make their own choices and have to live with the consequences of their decisions, but I will always love them. “Love the sinner, hate the sin.” I may condemn their actions, but I wouldn’t condemn them.

17. Any last notes?
Most Catholics are very poorly educated in their faith – I was, even though I went to a Catholic grade school through 6th grade, and then went to CCD classes until my confirmation. We didn’t really learn much about what the teachings of the church are, and how they are all supported by biblical as well as historical evidence. I have been learning all this as an adult.

Where you live in Boston is a very secular (that is, non-religious) area of the country. That is not typical in America overall. Yes, your mom listed off all the different churches you have in your neighborhood, but that’s not the point. The point is that the general population are not very devout and do not practice their religions as part of their lives the way you see in many, if not most, other parts of the country. The popular media (movies, tv, radio) tend to portray anyone who is religious as either a psycho or hopelessly out of touch with the culture, and usually a bit stupid as well. Around here, being a member of a church and part of a church community is pretty much taken for granted. We’re all just normal people, and our churches are a big part of our lives. Hollywood’s take on it is often “how quaint and old-fashioned;” it is anything but!

I hope that the religious and moral education we are giving our kids will help them to deal with all the pressures they will feel as they grow up. There’s a lot of “whatever feels good, do it” advice in our culture, and there’s also a huge “me, me, me!” thing going as well. Our religion tangibly teaches our kids that they are not the center of the universe, and that doing whatever feels good can have very negative consequences. I think it’s important for parents to teach these lessons, but having the backing of the entire Church community on these issues is very helpful.

nothing

I did housework today. That's a near miracle, but it's true. Hung around home except for picking up kids, and de-cluttered and cleaned and did laundry. You know, the stuff that most stay-at-home-moms have no problem caught up with, but always seems to get the better of me. Well, not laundry, but the rest of it, yeah. That stuff, it's relentless. You do it once, and you'll still have to do it again next week, or maybe if you're lucky you can stretch it out to 10 days or 2 weeks.

Watched 24 tonight, and it's just silly, but I still like it.

That's it for today. No news on the scans or anything -- I'll call in the morning to see what's up, expecting... nothing. At this rate perhaps we'll push the whole thing off to August, when I get back? Could I have a good summer with the "likely" treatment waiting for me at the end of it? Maybe. I'd certainly do my best to carpe diem.

I'd like to think I'd be able to have a good time, because being worried all the time is really exhausting, especially when there's nothing to be done about it. Right now, I'm in that place -- I can't do anything, I'm not letting it get to me, until I know more, well, it's like this: Move along now, there's nothing to see here...

Sunday, May 15, 2005

weekend off

Any weekend that involves ice cream sundaes both days is, by definition, a good weekend.

We had stuff to do, but none of it stress-inducing. I finally bought some sandals that I hope will last me more than one season; I may post on them later. It would be a good workout for my reclaimed camera, which seems to be working just fine.

I have a column due, but once again I'm tripping over recipes deciding which one to use. What a pain.

I wrote something Friday and Blogger ate it, even the "recover post" feature couldn't recover it. Now I couldn't reproduce it even if I wanted to. Last week was mostly spent reeling under the weight of the uncertainty of my upcoming tests and likely treatment. I'm more or less used to it now, but I am eating anything I want because I know the LID is right around the corner -- "Could start tomorrow!" I thought, snarfing down that chocolate-raspberry sundae just now.

Now just about everyone knows about my predicament. Summer plans? I had some, but who knows what will become of them. We'll work out something, one way or another. Everyone has been very kind and many offers of to come swim have been made. That could be really nice. We shall see.

Friday, May 13, 2005

profligate

We've been recklessly extragavant these past few days. Spending too much money, eating too much, going out for treats with the kids.

DS1 had only 3 days of math homework this week, so after school we went to pick up my camera, only to find the shop closed early. So then we went to Border's for a snack and books and what-not. I had a slice of key lime cheesecake, approximately a million calories and at least 50% of them from carbohydrates. I feel fine, though, but that's probable because I snarfed about a half-pound of bittersweet chocolate a little while ago.

Today we ate dinner out side and stayed out ridiculously late (it was after 7:30 when we finally came in), playing a version of "20 questions" where you had to limit the thing you were thinking of to a body part. You would think that it would be difficult to play this game with three children aged 4, 6, and 8 years old, but in our house that's not the case. It was fun.

DD declared she would like to be a pediatrician. DS2 would also like to be a doctor but hasn't decided on a specialty yet. By tomorrow DD will have reverted to her default ambition, to become a real princess, and DS2 will be deciding which super-hero he would rather be.

DS1 hasn't spoken of personal ambitions lately, but that's OK. He is quite extraordinary and will be brilliant at whatever he chooses, if we don't screw up.

I must make it clear here that I don't think that DS1 is more brilliant than his siblings, it's just that he's older so it shows more. All three of them are, in many ways, terrifying. So much potential! As I said, we are diligently trying not to screw up.

My mind is turning towards pleasant alternative ways to pass the summer, if it turns out we can't go East as planned. We will visit water parks and resorts and perhaps do a California thing if I'm up to it. It need not be dreary.

For now, though, we are as merry as possible while still retaining some semblance of order; it is a school night, after all.

As for me, I am eating and drinking, for tomorrow I may be back on the LID!

Thursday, May 12, 2005

Darth's life

Everyone, it seems, is linking to Darth Vader's blog these days, especially as we're approaching opening day of Episode 3.

I've known about it for at least a week, it seems, and I can't even remember where I saw the first link. I tend to travel in geek circles online, so I've seen it several times.

Today, I succumbed to the power of the Dark Side and clicked the link.

You should, too. It's an absolute riot, beautifully written, very evocative. Here's a compliment I don't give often, and I don't give lightly, but in all seriousness: it's brilliant.

If you have any affection for Star Wars at all, you should read it. So, go, already!

skeptics circle

The eighth edition of The Skeptics' Circle has been posted at Pharyngula. I make my debut as a skeptic with a link to my ambushed post, in which I try to rebut anti-Splenda hysteria at the checkout.

This is a collection of argumentative posts (and people). I may not agree with all of their positions, but it certainly makes for lively reading, and there's plenty of it. Enjoy.

the interview

Sandy over at the M.A.W.B. Squad recently submitted to an interview, and requested further victims... so, here I am. I volunteered because I liked the thought-provoking nature of the questions that Sandy was challenged with. I don't usually think about such things that are so far from my everyday realm, and it's good to stretch the mental muscles from time to time.

This morning, Sandy posted her questions for me and Night Writer; here are my replies. Update: and here are NightWriter's.

1. Pick a country, any country, to emigrate to for a year. What country did you pick and why? Given the opportunity would you make the move? Could you convince your family to do it?
I do a lot of reading and did a fair amount of travelling in my pre-kid days, so this is a tough question. My first instinct was to say Aruba but I know that in spite of the gorgeous weather, the tourist economy would get to me very quickly. I grew up on Cape Cod and was swamped with tourists every summer and couldn't wait for them all to go home come Labor Day. So, if I could, I'd move to Brittany (La Bretagne), France -- not Paris! I visited Brittany many years ago and I love the land, the sea, the people, and the food. There are ancient standing stones that attest to the continuing presence of humanity going back thousands of years. I'd go for a year but not forever -- and if a source of income was assured, as well as jobs when we got back, I think I could convince my family to come with me. At least, I like to think I could. I think my husband owes me, actually, since he's the one who convinced me to leave Massachusetts for Arizona, lo these many years ago.


2. What do you fear and why do you fear it? What helps you to cope with your fear?
My biggest fear is not being around to see my kids grow up. Since I have cancer, this is not a completely unfounded fear. OTOH, my cancer is highly treatable, and all my doctors keep telling me my life expectancy is unchanged. Still, when you're facing surgery and relatively benign but still nasty RadioActive Iodine treatments, it's hard not to think I'll be shuffling off this mortal coil sooner than I would like. I've had a few arguments about this with God already. The answer always comes back: you can stay, but it ain't gonna be easy.
My best coping mechanisms are spending time together as a family, and writing, especially if it's about something else. Ironically I wrote a post just last night (probably while these questions were being composed) entitled "coping".

3. Name a song that holds a special meaning for you and explain why you chose it. What event or time in your life does it remind you of?
This is a tough question just because I have to give only one song! I make very strong emotional ties to the soundtrack of my life, and music is very evocative for me. Since I have to choose, though, I'll go with Solsbury Hill from Peter Gabriel's Plays Live album. In the early 1990s, I was struggling in an emotionally abusive marriage. There seemed to be no clear path for me to the follow, and this song crystallized my own situation: so I went from day to day/ as though my life was in a rut/ until I thought of what I'd say/ which connection I should cut. I finally gathered up the courage to leave the bad marriage, but it took me many years to recover myself. Like the song's protagonist, I walked away from a lot of material wealth: Hey, I said, you can keep my things, they've come to take me home. Stuff is just stuff, after all, and there are a lot of things that are more important. Eventually I learned I had to take myself home, but that's OK.

4. From Bernard Pivot's quiz, made famous in the U.S. by James Lipton of the Actor's Studio: What profession other than your own would you like to attempt? What profession would you not like to do?
I'd love to be a professional chef, or even someone who gets to moonlight in a professional's kitchen, like Nina. I'd love to have the physical stamina it would require! I would hate to be a dentist. The thought of having my hands in other people's mouths all day is just "Ewwww!"

5. You get to be dictator for a week. In this week, you have the power to make five changes in the world. The leaders and the people must obey your decisions. What five changes would you make to improve the world?
This is by far the hardest question. My answers assume I have one week to clean things up, but then things revert to the status quo. So, here goes:
1. Get all terrorist "masterminds" in custody, including but not limited to Osama bin Laden, al Zarqawi, the leaders of Hezbollah, Arafat's Martyrs Brigade, etc. Once the leaders are in custody, smash the organizations completely. Implement a global intelligence/security policy that prevents such organizations from forming and gaining power.

2. Replace the lunatic currently running North Korea into the the ground, and all of his lackeys, with a stable, fair, democratic government.

3. Address our porous border situation. Living in AZ, I should be much more knowledgeable about this situation than I am. I don't have a problem with a guest-worker system, wherein people who have been vetted get passes that allow them to work here. I do have a problem with anyone and everyone being able to just walk in. I also have a problem with giving citizenship to people who have been here illegally, even if they have been otherwise law-abiding. There has to be some consequence for that action.

4. Force all media to clearly distinguish editorial from factual content. I'm not sure how this would work -- different colored typefaces? Change in text size for fact vs opinions in news stories? On air, a different background graphic? A meter that swings back and forth between fact and opinion as the newscaster is talking? In reality I know none of these would work, but it really would be nice if the legacy media would own up to its own opinions... and recognize them as such. Of course, as Supreme Dictator, I'm the one that gets to say which facts are correct!

5. Small beans, comparatively speaking, but force all programming targetted at anyone younger than 20 to be strictly reviewed for disrespectful attitudes towards parents, teachers, clergy, or anyone else that isn't worthy of disrespect. (Let's face it -- some people are worthy of disrespect.) Nickelodean and the Disney Channel, among others, have contributed to an entire generation who think it's OK to diss anyone and everything -- that's what kids are supposed to do. When I was kid, Bugs Bunny was the resident wise-ass, but he wasn't a role model then and he isn't one, now. But he is funny. Why is today's idea of funny for kids always somehow connected with stupid or absent parents or other authority figures? I think it has something to do with lack of imagination.

Bonus: What embarrassing thing would your spouse, parents, or kids tell us about you?
My mom would tell the story about when I was learning to cook, I didn't realize I was supposed to drain the macaroni before adding the packet of powdered cheese sauce! Hey, I read the directions and somehow didn't see that one important word, "Drain." I was 11 or 12 at the time, I think. My brothers still like to tease me about that. They also get that story mixed up with the time that our pastor, Monsignor Souza, stopped by on a Friday afternoon during Lent. My Mom was up in Boston for the day, and I was on call to make dinner -- you guessed it, macaroni and cheese. By that time I had graduated from the blue box to using Velveeta, and I could turn out a very nice dish. Dad invited Monsignor for dinner! I could've died, "Dad! We're just having mac & cheese!" He assured me it was OK, and it was. With Monsignor, it was much more about the company than about the food, although he liked the food, too. Still, I did not screw up the mac&cheese when Monsignor came to dinner, and if anyone tells you I did, they are confused!

My kids would rag on me for getting lost turning around, literally. If we're driving to a place we haven't been before, I always use MapQuest or something similar, but we'll often end up getting lost anyway. If we pull into a shopping center, I'll hear the question, "Are we there, or are you turning around because we went the wrong way?" I figure it's good to acknowledge my shortcomings and deal with them in a positive way, right? (heh) On the way home from DisneyLand, we took a brief detour through the Anaheim Angel's parking lot... the police who were directing traffic into the stadium completely confused me. I knew we didn't want to go that way, but with cops everywhere, I didn't really have much choice, or at least that's how it seemed to me! LOL

My husband would never tell an embarrassing story about me. He has way too much class. He lets me do all the telling myself.


That's it from me. Anyone willing to be interviewed? Cribbing Sandy's directions, here's how to play:

1. Leave me a comment saying “interview me”. The first five commenters will be the participants.

2. I will respond by asking you five questions.

3. You will update your blog/site with the answers to the questions. Not to leave anyone out, if you don't have a blog I can interview you by e-mail and post your responses on my blog.

4. You will include this explanation and an offer to interview someone else in the same post.

5. When others comment asking to be interviewed, you will ask them five questions.

coping

Mainly by trying not to think about... things. You know.

I talked to a couple of people today, who hadn't heard about the whole scheduling snafu and potential ruined summer scenario. Both said exactly the same thing, "That would drive me crazy."

Well, yeah.

Last night we went out for dinner when it turned out the chicken in the fridge was inedible. (I should've paid more attention to that "sell by" date.) Then we went and hung out at Barnes and Noble for a while, and it was a nice decompression.

I got my hair cut today, and that was another nice decompression, except that they ran late and so I was late picking up DS1 from school. I was sure he would be very upset. For once, though, he didn't notice or care, so I stressed myself out over nothing.

The rest of today was odd in that suspended way that happens from time to time -- you know something's going to happen, but not when, and not exactly what, so events of the day take on a weird importance, or meaninglessness, depending. For example: dusting becomes meaningless, whereas having an afternoon snack with the kids becomes very important.

Homework, dinner, dishes, laundry -- all got done, somehow or other. Not much else, though. It's enough.

Tuesday, May 10, 2005

Tubby, Twig, and Wah

Who knows what deep-rooted psychological trauma we're planting in using this latest round of children's nicknames?


Twig, Tubby, and Wah at DisneyLand


There is an element of truth in each -- Tubby really does have a little Buddha belly, and Twig is quite thin. And of course, Wah will cry if you look at him crosseyed somedays, and just about everyday if you dare to say, "No." (I am so ready for that phase to end. It was old at a week, and it has been going on for at least a year now.)

I think it is helpful for us to perceive our own imperfections, and we've all got areas that could stand some improvement. DS1 knows he has been gaining weight too fast, just as DD knows she gains very slowly even while she's growing up like a weed. DS2 knows he's a cry-baby, and he knows that it's very annoying. He is learning that there are better ways to respond to the world.

There are ways to point out shortcomings that encourage positive change, and there are ways that foster resentment. So far we're not seeing anything but grins when we use these names -- it's not rocket science, after all. You don't call a kid who is upset about something a name that will tick him off. You can, however, call a kid who just inhaled his dinner, "Tubby", or a kid who is (fake) crying over nothing for the 100th time that day, "Wah."

At the right time, in the right tone, these names say, I know you. I love you. I'm glad you're mine.

Monday, May 09, 2005

the collision of expectations and reality

In a previous life, I managed a small group of software developers. We were a liaison group, and had four other groups relying on us. I used to tell my team that the biggest part of my job was managing all the other managers' expectations -- if they knew what we could deliver, then they could do their jobs, and we'd all be happy, in the corporate meeting-deadlines sense of the word.

I learned very early in my life as a parent that expectations management is even more important with kids, especially with children as persistent and neophobic as my oldest. You can't just tell such a child, "Time to go, sweetie!" You have to institute an elaborate Early Warning System. EWS, stage 1: "In a little while we're going to the grocery store." EWS, stage 2: "Time to get your shoes on so we can be ready to go." EWS, stage 3: "Two more minutes to play." Then, finally, you get to say, "Time to go," and instead of getting a tantrum, you actually do get to go.

I'm not a laser-focused 4-year-old, but I am human (heh). I like to know what's going on, and so I ask a lot of questions. When I get answers, especially from my doctors, I believe them.

I saw my endo last Tuesday, and the upshot was: 1) start the LID (low iodine diet) because 2) we're giving you Thyrogen shots and 3) you'll have your whole body scan (WBS) in about 2 weeks. Oh, and call the scheduler to get the ball rolling.

That same day, I called the scheduler, she said, OK, I'll put the order in for the drugs, and we'll go from there. She said she'd call me when she had everything set.

I called the scheduler this morning to see how things were going. No word on the drugs, and we can't schedule the scan until the drugs are in house, but that doesn't matter anyway because we're scheduling scans at the end of the month, now.

Quick check of the calendar: May 9.
The end of the month!?

So then we have a conversation: Why am I on LID?
You don't need to be on the LID... it's too soon.
LID is recommended for at least one week, preferably 2 weeks, before a scan or RAI treatment. Of course, I had already rearranged my Mother's Day plans because of it, and I have been obsessing over it for the better part of a week, but hey, no harm done!

OK, I take a deep breath to try and let all that settle in, and then launch into the whole "likely" further treatment scenario, and my summer plans (leave June 25, return Aug 3) and the likelihood that surgery would either 1) screw that up or 2) be hanging over my head the entire summer -- some choice, huh?

So, the scheduler is looking into everything to see if we can somehow or other get the scan done, as originally intended, asap, but in the meantime I'm off the LID because I'm not optimistic about that and I wanted to drown my sorrows in a cup of coffee with half-n-half. (It was great.)

I've been fighting off an emotional tailspin ever since that call. I'm annoyed with myself for believing the doctor and not finding this information out from the scheduler the first time I spoke to her. It's my own fault. At the same time, I'm not blaming myself for being hopeful that I could get my treatment done in time for me to go away with the kids. Yes, I am selfish that way, I want my East Coast summer, and I will be massively disappointed if I can't have it. But I'm also grown up enough to realize that I will do whatever my doctor tells me to do regarding getting this cancer cleaned out, so I'll just have to suck it up if my vacation plans get changed.

I was doing fairly well with the knowledge that surgery is a "likely" event in my near future; I think the doctor did a great job of managing my expectations there. It's the expectations of the process leading up to surgery that have been completely bungled, and I'm annoyed and nervous and generally upset. It's just going to take a while to process all this new information and get my expectations back in line -- and it doesn't help at all that the old expectations, while not exactly terrific, included summer on the East Coast, while the new ones make me put that trip into the "highly tentative" category.

I had a great Mother's Day weekend even while dealing with the LID, because I had enough time to process that that was the way it was going to be. Today was entirely different, with way too many palpitations, no patience at all, and a generally trapped and frustrated feeling. And it was all avoidable, if I had only known what to ask the scheduler from the outset.

The moral of this cautionary tale: doctors are not schedulers. If your doctor tells you that you will have a procedure by a certain time, while at the same time telling you to give the scheduler a call, do not plan your life around the time the doctor gave you. The doctor has no clue. The doctor may wish for you to have a procedure by a certain time, but the reality is, this is something they have little, if any, control over. The scheduler has all the necessary information and the power, and no matter what the doctor says, until the scheduler nails down a date for you, you are not having that procedure.

Since I have no control over the progress of this disease, I like to think I at least have a handle on my treatment. Uncertainty is the worst thing of all. I'm comparing how I feel now, with that "likely" surgery out in front of me, to how I felt last October before my thyroidectomy, when it was thought that I might have just the beginnings of papillary cancer. I'm thinking that this is worse, because I know I have to have it (I'm almost sure, anyway), but I don't know when, and I just want to get it over with! Back then, I wasn't even sure I had cancer, but at least I had a surgery date. Back then, I knew it would be a thyroidectomy, and now I'm not sure if I'll need to have just a few nodes out or a radical neck dissection, a prospect I find terrifying.

There's no way to know until I have the scan, and I still have no idea when that will be. You can't manage expectations without information, so I'll just have to practice living with uncertainty for a while. I suppose I should get used to it. The idea that I have any control at all is a useful delusion, sometimes, but right now it's just getting in the way.