Wednesday, March 28, 2007

lessons

Today, just one: no amount of dark chocolate, however luscious, can compensate for having managed to get only 4 or so hours of sleep for past three consecutive nights.

Yesterday's lessons:

1) A two-hour mid-day nap helps, but not that much.

2) Never, never eat corn chips out of the bag while reading. Eventually the bag will be empty and you will be wondering where the chips all went, and then you will realize that you've eaten them all quite without noticing. Always take out a bowl and dish yourself a serving. That way your clothes will still fit you in the morning.

3) Staying up late knitting is no more virtuous than staying up late doing any other mildly obsessive behavior. Especially when you're working on a sweater for yourself:

from Knit Simple Spring/Summer 2007

What? I need a new beach cover-up (my old denim shirt is falling apart), and I've had this yarn since before the Woolworth's in Boston's Downtown Crossing went out of business. I knew if I waited long enough, I'd find the right project for it.

mantra

I started to say "new mantra", but honestly I've never had a mantra* before, that I can remember. So this is a first for me, and I'm hoping it will help me curb some of my self-destructive habits, such as staying up all hours watching Turner Classic Movies or obsessively scouring the web for delicious content:

Make good choices.

Easy enough, right?

If only.

----
(*) What is a mantra, anyway? I looked it up, and it seems that I'm somewhere between the two meanings, the first being a sacred verbal chant, the second being a commonly repeated phrase. Obviously "Make good choices" isn't explicitly spiritual. It is a directive to me (think about and do what's best) and an abbreviated plea for help (Lord, help me figure this out!), simultaneously. So it's not really a mantra in either meaning of the word, but I'm going to keep calling it my mantra anyway.

a wee bit fiesty

On Monday nights, I teach a class of fifth graders Religious Education (RE). The majority of the class made their confirmations in early February; the remainder will do so in mid-April with their siblings. Due to the oddities of this scheduling (we're playing catch-up with these younger grades because of the newly Restored Order of the Sacraments (pdf)), we completed the sacramental preparation part of our course by the end of January, and since then, we've been working through a traditional fifth grade RE text.

There's no way we're getting through the whole book, so last week I reviewed the table of contents and the lessons and started pulling out which lessons we would go over. Last week we covered Lent and started the section on prayer. This week we finished the prayer lesson, and started the lesson on the Sacrament of Reconciliation.

And somehow or other, with about 10 minutes left to go in the class, we came around to one of the students asking me about the recently-aired documentary on the Tomb of Jesus.

(rolls eyes)
Don't get me started...

Fortunately, I had read enough around the web to be able to thoroughly refute the idea that the Jesus in the tomb was, you know, The Jesus. But I also managed to convey to them the very earliest history of the Church: if Jesus really was buried somewhere, that means the Resurrection is a lie. Why would the apostles lie about something like that? Why would St. Peter, and all the apostles, go to their deaths professing the truth of the Resurrection if it was just some bizarre joke they were playing?

And then we got started on the DaVinci Code... and I got a bit impassioned about what garbage that is, and even more impassioned over the Church's supposed suppression of women. Hmmm, let's take a look at that idea, shall we? Mary, the mother of Jesus, is the most revered human (aside from Jesus, who is also God), who ever lived. And she is? Yes, a woman! We can talk about countless saints who also happen to be female, but I prefer to go way, way back to the morning of the Resurrection. To whom did the Angel appear in the empty tomb, to announce what had happened? To the women, members of society viewed as property, valued only slightly above slaves, with very few rights of their own. At that time, women were not even allowed to testify in court.

If you were going to make up a story, why would you choose the most unreliable witnesses, according to your culture, to be the ones to receive the most important message ever? It doesn't make any sense at all as a lie, does it?

Anyway, there was some good question-and-answer stuff and many of the kids were actually engaged in the conversation -- we even ran over by about 2 minutes, which has never happened before. One of the other topics that came up was the subject of Mary's perpetual virginity. I struggled to explain how, if you truly believe that Jesus is God, it's the only thing that makes sense: what human is fit to occupy the space that once held God? Such a space is sacred, and always should remain so. As these things often go, the best analogy occurred to me much later:

The tabernacle isn't a breadbox.

Tuesday, March 27, 2007

airhead

Yesterday, I used a knife to butter and cut up the kids' pancakes... and then I put it back in the silverware drawer instead of the dishwasher.

I don't feel spacey when I'm around people or actively working on something. I only seem to screw up auto-pilot things, like turning off the stove. I know, people do that sort of thing all the time, but I can't ever recall having done it myself. The burner was set to the lowest possible setting, so that it was difficult to see the flame. I only realized it was on later when I noticed the air was warmer over that burner. No harm done. (So far.)

Sinus meds are doing something because the big node under my jawline has subsided. But my face still feels clogged up. Is this a chicken-and-egg problem? Will the sinus thing ever resolve if my thyroid meds are whacked? How can I tell what's a sinus symptom and what's a thyroid symptom? This is annoying.

I have a sense of waiting for something to happen, and I was trying to figure out what that was. I think I know: I'm waiting for the sinus infection to resolve, and for my thyroid meds to be calibrated. I'm waiting to feel like me again.

Friday, March 23, 2007

new meds status report

Thyroid hormones: it may be just my imagination, but I'm feeling brain fog settle in. I made a spectacular blunder this week -- no need to detail my embarrassments here, and I was able to reschedule -- and I can't blame that on not getting enough sleep. Last night I got 8+ hours and I still feel fuzzy-headed. Of course, that could just because the...

Sinus meds aren't working, and my PCP called in a new prescription for me today/ I'm clinging to the hope that this new antibiotic will knock the infection out, but just barely. I'm not in the mood for expensive tests and invasive treatments. But I am disappointed that regular use of my Nasonex and Mucinex, combined with the Biaxin, haven't had more of an effect. If anything, I'm worse today than earlier in the week. I have a headache, but it's more like my face hurts -- behind the eyes and nose. Ick.

Last but not least, the Questran seems to be doing its job, more or less. You really can't tell about that kind of thing when you've just started on a course of antibiotics. At least I can't, because antibiotics routinely screw up my digestive system. So while the situation isn't perfect, I will say that it is improved, and that is a very good thing.

I've played hooky today: not working, and nothing pressing that really needed to get done. I haven't been a total slug, though -- I've got some laundry going, and I made some primitive efforts to save the rose bushes that have flopped over.
March 2005: DD fleeing from the monster rose bush...

Recent high winds combined with the heaviness of the bushes led to trellis failure for three of our Lady Banks. Fortunately, we were planning on de-trellising them anyway and training them along the privacy wall, so it's not that big a deal. Except that now we basically have no choice!

Sometimes life just makes decisions for you that way.

Thursday, March 22, 2007

I really don't want to know

I don't understand tattoos, or the impulse to get one, at all, and I wrote about it some time ago, here.

At the time, my friend Tom joked in the comments that I should "copyright and patent the term Tattoo Taxidermy right now," and I would become rich beyond my wildest dreams.

So... should I be disturbed by the recent Google searches for "tattoo taxidermy" that have brought new readers to my blog?

Like I said, I really don't want to know.

Wednesday, March 21, 2007

continuing education

Over the past week or so I've learned the following interesting medical facts:

Bones grow faster than muscles. I knew that bone growth occurred at the bone plates, but I never gave a thought to the fact that the musculature often doesn't keep up. This is a big part of DS1's gait/coordination problem: about the time of my original cancer diagnosis, he was going through a major growth spurt, and because of all my medical dramas, he wasn't enrolled in any kind of organized physical activity. He lost ground there, and has been playing catch-up ever since. (Here's an article by Dr. Sears which talks about this problem.)

Vitamin D deficiency is the latest buzz in early detection and treatment. I was surprised when my endo ordered a whole Vitamin D panel on my last bloodwork. I'm coming in on the low side of normal, but still within range -- the value we're shooting for is 50, and I was at 39, which isn't too far off. (The dr was not concerned). What's the big deal? From Science News Online:
over the past decade and especially the past 5 years, research has linked a broad range of additional benefits to having ample vitamin D. It's shown that the nutrient fights cancers and diabetes, is the pivotal feedstock for a hormone that protects muscle, and inhibits autoimmune disorders from multiple sclerosis and lupus to inflammatory bowel disease.
Who knew? Not me, and I thought I was relatively on top of this stuff.

Yoga is probably not the best exercise for preventing osteoporosis. I talked this one over with my endocrinologist also. I'm at high risk for osteoporosis because I'm tall, on the thin side (not so much these day!), and I'm on that suppressive dose of thyroid hormones to keep my cancer at bay. The new dr stressed that the joints really need to be pounded -- she suggested jumping jacks -- to get the bones to respond the way they should. It's the repeated stress on the bones that makes them grow stronger. But strength training exercises are important also.

Acute sinus infections left untreated can become chronic conditions requiring more invasive measures to resolve. The entirely personal information I learned today on this topic is that I've been to my primary care physician 5 times since August of 2006 for sinus infections. He (PCP) suggested I take this to my ENT, it may be time for a CT scan of my sinuses. But what I'm really going to do is take the vile anti-biotic he prescribed (14 days! ick!), use my Nasonex faithfully every day, and just try to get over this one and prevent another one. CT scans are expensive and I'd rather not unless I absolutely have to. Fortunately I have a good game plan and rather comprehensive information.

Sometimes, the intended use of the drug is "off-label" even though it's exactly on point. Case in point: bile acid sequestrants are often prescribed to post-cholecystecomy (gallbladder removal) patients, because without a gallbladder, too much bile flows into the intestines causing various "digestive transit" problems. My g/e doc prescribed some Cholestyramine for me. Reading the drug information sheet, I noticed there was not a word on it -- not anywhere -- about this use. The closest it came was noting that it can relieve itching associated with liver disease. Fortunately, the web comes through and backs up the g/e dr's treatment plan with the first hit from my "cholestryamine gallbladder" search. (You really have to know how to construct those queries!)

It's a good thing I read that sheet, too: the cholestyramine can interfere with thyroid hormones when taken too close together. Fortunately, I take my thryoid meds first thing in the morning, and the Questran will be an afternoon thing. It's not sticky or goopy like fiber drinks -- it's more fuzzy. This, I'm sure, is because it's a resin, and resins simply do not dissolve in water (what they will dissolve in, you would definitely not want to drink.)

So now I'm on a boatload of new drugs:
1)Mucinex, for the sinus infection
2) Nasonex, for the sinus infection
3) Biaxin, for the sinus infection
(damn sinus infection!)
4) Questran, for the rapid transit issue

In addition to all that, I'm still taking all my other usual meds, plus ibuprofen every four hours to take the edge of this never-ending flare.

Meds, meds, meds. What I really need to do is 1) consistently exercise and 2) consistently get at least 8 hours of sleep each night. On point 1, I'm not doing badly at all -- even swam today. Point 2 is my undoing, and I'm sure is contributing to my upwardly-creeping weight as well.

There's always tomorrow (notes time). (Ahem) Well, the rest of today...

Friday, March 16, 2007

spring breakdown

That has to be one of the most over-used puns this time of year... I don't care.

I'm up too late and wondering why and realizing it's because I'm going crazy, having to deal with the kids literally all day long.

We're not used to it. I'm not used to it, in a major way.

The real problem is that I have been going non-stop since before the workshop, and I really need a day (a school day) at home to just get everything in order without anyone else around. I can do the straightening up when there are other people around, I just prefer to do it when I'm alone and uninterrupted.

It's stupid to be taking "alone time" from sleep hours. I will pay, I know. But (ha!) it's too late now (literally).

Maybe more sleep would reduce the need for alone time? Hmmmm.

Thursday, March 15, 2007

the great experiment

It's always interesting when the subject is yourself. The current experiment involves dropping the Cytomel (T3) from my drug regimen and seeing how I do on a straight T4 (Levoxyl) regimen. I have been on a combined T4/T3 dosage since 2002, because I believed that the T3 would help with all my auto-immune issues (Hashimoto's thyroiditis, rheumatoid arthritis, etc).

To date, my RA has been remarkably mild and stable, for the most part. I have been flaring for the past 3 or 4 weeks, but I've also been under a lot of extra stress and I have also, sadly, fallen out of the habit of doing my daily exercises. The exercises make a huge difference, as does getting enough sleep. So even though I'm feeling rather crummy these days, RA-wise, I'm tending to blame it on lack of exercise and lack of sleep, rather than the disease advancing or anything like that.

So, after all these years on the T4/T3 combination, why am I doing this now? Well, the T3 costs me more than $800/year. If I can safely drop it, and still feel well, that's $800 (actually closer to $900) I don't have to spend on T3. I honestly don't know whether or not it's helping, and I won't know until I'm off for a while -- hence, the experiment. As a long-time champion of the combined T4/T3 regimen, I have a sense that I should feel guilty about going off the T3 -- but I don't. If I don't need it, why take it?

Today is day 2 off the T3. I'll go for bloodwork in about 6 weeks to see how all my thyroid hormone levels are doing; my T4 may need a little tweaking to make up for the absence of T3. That's OK -- I can get a year's supply of T4 for $60, including shipping charges.

Note that I'm doing this under my new endocrinologist's supervision -- it's a very bad idea for thyca patients to tinker with their meds without talking to their doctors, first. Happily, my last ultrasound came back unremarkable, and my Tg was OK, too. We'll gear up for another round of Thyrogen and a nuclear scan in August, just to keep an eye on things -- and if that one's clear, I'm hoping we can scale the testing back to every 2 or 3 years with periodic bloodwork monitoring.

It's quite a relief to have this feeling that I'm over the active phase of my cancer. Even if it's not true (the doubt still creeps in occasionally), it's still nice to feel like it's OK to get on with life and not worry so much all the time.

Thursday, March 08, 2007

half past busy, quarter til dead

I'm exhausted.

Mom left Monday morning, and it feels like my responsibilities exploded at the same time.

Work: Monday, Wednesday, today and tomorrow -- but tomorrow is an early release day, so that's not too bad. Monday was fifth grade, OK. Yesterday was middle school language arts, and that was a pip because all the classes had library/computer time. Today and tomorrow: second grade. Oy. Even though the class is small, it's still frazzling.

I'd been trying to figure out why that is and I realized that part of the problem is that DD, who is in second grade, is more mature than most of these kids. Of course she's older than most of them, having a birthday in early November, but that's not all that's going on. Some of it is personality and capabilities, and some of it I can chalk up to "behaviors I will not put up with," like baby talk. I can't imagine using baby talk to a teacher ever, but I've run into it a few times this week, and not just in second grade. Weird.

When I haven't been at work, I've been trying to get other stuff done like taking DH's car to have the tires rotated and balanced, or grocery shopping, or finally trekking over to the swim shop in Tempe for DD's fins and stuff for the swim team. Also house cleaning, which went long neglected in the run-up to the workshop, and laundry, which falls back to me since Mom isn't here to do it anymore.

I'm ready for spring break! And I'm ready to find out my test results. I choked on my own spit twice today, once in class -- fortunately not while I was doing a class lesson. I can't have that thing happening in school with any frequency, it's too disturbing. It's not that I'm actually choking or in any danger at all (not even in danger of having a panic attack), it just looks and sounds very bad. Can't go scaring the little ones! So if it's not recurrence then I shall try to get in to see my ENT to hear what he says.

Meanwhile, Cooper had ear mites but no urinary tract infection, so there's no explanation for him peeing on the clean laundry other than him marking it for his own (ewww).
Yes, I'm quite comfortable. Why do you ask?

We've just determined Alice (above) is deaf, and that will necessitate another trip to the vet for a check-up to see if there's anything we can do for her. She's a happy cat so I shouldn't feel sad for her, I know, but at this point in the week I am so depleted that every little thing falls like an anvil.

Obviously I need to work on both my physical and emotional stamina.

Sunday, March 04, 2007

"I heard there's a riot going on down here"

So sayeth the security guard, late yesterday morning, as he sauntered down the hall towards our conference rooms.

Yes, I replied, but we've got all them all safely contained in there now.

We all cracked up. ("We" being me and the other two or three women who were staffing the registration desk and generally rounding up stragglers.)

To say the workshop (the first Arizona Thyroid Cancer Survivors' Workshop, that is) was a success would be an understatement. Apparently, our first time out of the gate, we managed to hold the largest regional ThyCa workshop ever, with 118 registered attendees.

It was just an unbelievable day. So many people saying things like, "I never knew anything like this existed," and "No one has ever even heard of this disease," and "I am my doctor's only thyroid cancer patient, I get to be his teaching case," and on and on and on. So many "thank you"s, so many "This is fantastic!"

We were all quite overwhelmed -- and that includes the speakers. The sense of gratitude and relief among the survivors and their families and friends was palpable. Everyone was talking to their neighbors and sharing their stories, giving advice or just commiserating. It was awesome.

I remember the relief I felt when I found real live people to talk to about my thyroid cancer. Yesterday, I saw that look mirrored in dozens of people's eyes, the recognition: I am not alone.

We worked hard and we helped a lot of people.

Sure feels good.

Friday, March 02, 2007

ready?

The van's all packed up, my lunch is waiting for me in the fridge, and as far as I can tell, I haven't forgotten anything, and I've managed to think of some things to bring that might be helpful in emergencies (kleenex, tape, scissors, that kind of thing. And chocolate.) I've even written my intro speech.

Tomorrow's the big day: the first ever Arizona Thyroid Cancer Survivors' Workshop.

Even with traffic closures on Loop 101, I'm sure we'll have a great day.

Doctors: how to annoy your new patient

First Visit
When she arrives in the office, make sure the reception desk staff ignores her completely for one to two minutes while they finish up whatever tasks they are doing.

When she gives her name -- and hands over her insurance card -- make sure the receptionist can't find her appointment. If the patient then corrects the spelling of her last name and points out her time slot to the receptionist, instruct the receptionist to say nothing more than, "Oh."

Accept only the office's new patient information forms from the patient. Require a blank stare in answer to all questions regarding other medical records the patient has brought with her. Make the patient ask several times what to do with the records before finally telling her to hold onto them and give them to the doctor during the appointment.

Do not call the patient in for her appointment until at least 45 minutes past her appointment time.

Kick off the appointment with the obviously-correct-nearly-all-the-time assertion that the patient is "a typical case and just needs the usual follow-up." After all, there was no need to even skim through that new patient information packet, right?

Allow the office staff to interrupt you when with a patient as much as they like. Can't find an insurance code? No problem! The patient can wait.

Insist on scheduling scan appointments and follow-up appointments separately, without consideration for the fact that the patient lives well over an hour's drive away.

Send the patient off with an incomplete lab slip for blood draws, and have office staff call her on her cell phone to tell her what other tests need to be ordered.

(Blood work was done a few days after the first appointment.)

Second Visit, about 2 weeks after the first

Once again, make sure office staff focus only on their very important phone calls, and do not acknowledge the physically-present patient with even a flicker of eye contact. The fact that they are on the phone gives them license to ignore a patient for up to a full five minutes.

Make sure that the patient waits for a minimum of 30 minutes past her appointment time, again -- consistency is key!

Make sure the financial responsibility form states that the patient will be having a test that is no longer possible because the organ to be scanned was removed a year and a half ago.

When the patient informs the tech that the release form is wholly inapplicable, make sure the technician responds, "Oh, I didn't look at your history" so that the patient knows just how thorough your practice is.

During a scan, never ever give any information to the patient regarding what you're seeing.

If the patient asks for a copy of her lab test results, ask her if you have reviewed them with her yet. If the answer is "No, but I want them for my personal records anyway," refuse to comply and state that you will give her a copy at the follow-up appointment in two weeks.

Leave the examination room while the patient is still straightening up, post-exam, so that you don't have to deal with any potentially troublesome questions.

* * *
Every single one of these things has happened to me recently with a doctor who came very, very highly recommended. I'm giving this doc one more shot -- the aforementioned follow-up meeting in two weeks. We'll see how that goes. My expectations are set very low. I just want to get my tests results and get out.

Of course, if the test results reveal anything requiring treatment, I'll be needing to deal with this doctor a lot more. But I'm going to remain optimistic and say everything's fine, in which case I won't need to go back for six months. I think I can live with that. It's a pain but less of a pain than going all the way to Houston.