Monday, July 30, 2007

regarding salivary gland issues

From time to time (like today!) I get an email or a comment asking for good information about salivary gland damage from RAI, RadioActive Iodine treatment for thyroid cancer.

Unfortunately, post-RAI salivary issues are a lot more common than your doctor may let on. For the most part, the first flare up is (more) severe. Some people have one incidence, post-treatment, but many continue to experience periodic flare-ups, some triggered by eating certain foods (sour, spicy), or sometimes nothing at all.

If you're looking for some good introductory material about this condition, here is an article on ThyCa.org.

Here is the link to the article on MedScape about radiation damage to salivary glands. This is a much more technical article targeted at a medical professionals, but it also includes an illustration of a very beneficial massage technique (figure 7). (MedScape may require free registration.)

Last but not least, I recommend NSAIDs such as ibuprofen (Motrin, Advil) or naproxen sodium (Aleve) as both a preventative immediately after dosing with RAI and for the next 2 days, and as a treatment whenever the salivaries swell up and become painful.

An aside: I had trouble recently distinguishing jaw pain (TMJ/TMD) from salivary gland issues. Some ways to distinguish between the two: salivary gland issues will not cause clicking or popping when you open and close your mouth, as far as I know, and repositioning your jaw or opening or closing your mouth will not change the type of pain/pressure you experience from salivary glands. If you're hearing pops or your jaw joints hurt when you open or close your mouth, you're most likely suffering from TMD. Unfortunately, it's entirely possible to have both issues at the same time!

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Saturday, December 10, 2005

mouthful of salt

My parotid salivary glands are acting up something fierce lately. My face is mildly mumped, not so that anyone else can tell that they're swollen, but I can see it. They don't feel very good, either, so massage, while beneficial, isn't at the top of my list at the moment.

The worst thing is that I keep getting streams of salt water instead of normal saliva. I'm chewing a lot of gum but you know, salty wintergreen or salty peppermint just aren't doing it for me. I use my Biotene stuff religiously, too.

I wish I knew what triggered this behavior, so I could avoid it or at least expect it. I also wish I knew how long it's going to last. It has been going on for about a week now, and it's affecting my eating and desire to cook, too. When everything tastes salty, your whole relationship with food gets distorted. And this is probably the single worst time of the year to not be able to taste properly!

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Thursday, June 16, 2005

disturbed

I'm up late again tonight, although I slept for probably an hour earlier, lying on the couch not-watching Hitchcock's Rope. I have been TiVOing a lot of old movies lately, and that was one that showed up, but I realized I have seen it before so I just drifted right off to sleep.

This is one of those times when there's just too much happening, and I don't know when I'll be able to just release everything... I have the kids all day, which is really fine, but it's better when I get more sleep. Then there's the Rosie situation, which is not fine even though it was a good decision and the right decision, but it's just there, hanging in the background, waiting for me to deal with it.

Then there are people around me who are dealing with various stresses of their own, and I am of no help whatsoever, which sucks.

Last, I'm still feeling punked from the radiation etc. My salivaries do weird things from time to time, not as bad as they were in February, just not normal. Taste and digestion are still shot, and my diet has been terrible. Nothing really tastes good and eating just makes me feel (and be) sick, so -- ick. But I do eat, and I'm trying to be good about taking my supplements as well as my meds. Drinking is really a problem, since water tastes particularly horrible these days. Ice-cold Propel is about the only thing that tastes decent; my sense of sweet taste is working the best. Great! Just what I need -- only my sweet tastebuds are working! My teeth have become really sensitive but I have been too lazy to do flouride treatments. And my hands are killing me.

It's a vicious cycle, this is. The radiation causes physical side effects which produce stress, and the stress feeds into its own physical manifestations, which of course creates more stress...

Tomorrow: shopping, and probably making cookies. We need to shop for DH for Father's Day, we'll see how that goes. I should make a list of the things I want to get done before I leave, but that will probably send me right over the edge. I'm going to take it day by day and try to manage better that way.

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Monday, June 13, 2005

follow up (the whole body scan experience)

I had my follow up whole body scan this morning.

It really isn't so bad, dragging my butt out of bed at 6:30, cleaning my teeth and face, getting dressed, and hopping in the car to get to the hospital in the heart of downtown Phoenix by 7:45 so I could check in. Obviously there are better ways to spend a morning, but it really isn't that bad. If, on the other hand, that trip represented my daily commute, I would probably be suicidal after a month.

At the registration desk, whoever entered my appointment had omitted my middle name, and so the computer didn't recognize me. I told the woman who was registering me that I was just there on June 3, and I have been a patient there since November. It took a fair amount of I-don't-know-what to consolidate the two records, and then to figure out how much I owed them for my procedures. I spent over a half-hour on registration!

Then, on to the scan. My wait in the imaging department was mercifully brief, and then I spent another hour+ in the scanner. Being in the scanner is not difficult, but it's not relaxing, either. You really can't fall asleep because you have to hold yourself together, more or less. I don't know how bigger people manage on those narrow beds! I'm basically a twig (scant 130 pounds stretched out over 5 feet, 7+ inches) and I didn't feel very secure. The velcro straps they put over you don't really help all that much, but they do help.

Today my hands got a little numb; on the 3rd, my arms felt dead for their entire lengths. So today was better, although I have no idea why.

I wrote on the 3rd that I was thinking of that classic Gloria Swanson line, All right, Mr. DeMille, I'm ready for my close-up. A nuclear scan is about the closest close-up you can imagine. The scan plate starts out over your head and neck, and it is literally only an inch or so from your nose. I have said to more than one technician that I'm always worried that I'll sneeze and give myself a concussion. It's a funny comment, but it's also a serious consideration. The scanner plates are large -- probably at least 2 feet, square -- and fixed in place by their robotic arms that move them around. It's not like you could just tap the thing and have it swing out of the way.

My other thought on being in the scanner is that it is not so much like the traditional coffin as it is like a sarcophagus, the Egyption fitted coffins that all those mummified pharoahs were placed in. Even with the sarcophagus feeling, I prefer the nuclear scan to an MRI, say, because it's very quiet. Every time the MRI noise went off I felt as if I would jump out of my skin, no matter how hard I tried to brace myself for the next round. It's just so loud!

On the 3rd, I lay on the scanner thinking, I bet I'm going to light up like a Christmas tree, but the scan image itself is a negative, so the more uptake there is a given area, the darker that area appears. On the 3rd, my scan was clean, except for the expected areas of uptake, like the salivary glands, nasal mucusa, a bit in the liver and stomach, a little in the bladder. The preliminary scan they did on the 2nd showed a faint shadow in my neck, but in the final scan on the 3rd, that area was clear. The doctor told me they sometimes see some faint uptake in the carotid arteries like that, and since it was definitely gone on the 3rd, I didn't worry about it.

In sharp contrast to my scans on the 2nd and 3rd, which I fervently hoped would be clean, today, I was hoping that something would show up. We knew from my elevated Thyroglobulin that there was still some cancer somewhere in my body. If today's scan was negative, that would've been very unusual, and very bad. A negative scan today would mean that my cancer had somehow become undifferentiated, and was no longer taking up radioactive iodine. Since we use RAI to both monitor and treat thyroid cancer, that would've been dire news.

So I was quite relieved to see the three little dark spots along the cervical chain of lymph nodes in the right side of my neck, and not all that surprised, either. The doctor was pleased with the amount of uptake -- he was surprised that there was so much. Why didn't they show up on the first scans?, I wondered, but I'm not going to be torturing myself with that. If they had, I might have had to go for surgery... but they didn't (I saw the scans, I know!), and so we went with the RAI... and here's hoping it will do the trick.

I still think there is a very good chance that this last round of RAI will be the last treatment I'll ever need for my thyroid cancer, as long as I keep my TSH suppressed. I'm willing to do that. I go back for another scan in 6 months, and then we'll see.

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Thursday, June 09, 2005

feels familiar

I'm generally OK these days, post-RAI, except when I'm not. Let's see:

- crushing fatigue that strikes at random, no matter how much sleep I'm getting? Check.

- fuzzy tongue, diminished salivary production, altered sense of taste? Check.

- complete aversion to coffee and other previous favorite foods as a result? Check.

- green-about-the-gills much of the time? Check.

- Other nasty digestive symptoms? Check.


Seems that being dosed with 100 mCi of radioactive iodine induces symptoms which perfectly mimic the early days of pregnancy. It was a lot easier to take when I was pregnant.

BTW, I am NOT pregnant. Just thought I would make that clear.

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Sunday, June 05, 2005

brief notes on the RAI experience

100 mCi is easier to deal with than 200 mCi.

I am climbing the walls. There is a huge difference between being post-op and hypo, on meds withdrawal for weeks, and being on Thyrogen.

Thyrogen is mondo expensive, but worth. every. cent.

Dr. S recommended 600 mg ibuprofen every 8 hours for RAI mumps; it works. Mostly.

My taste buds are shot. I'm not sure if it's from eating Altoids sours all day as directed, or from the RAI. Could be some of both. I feel like it was burned last week and is just now healing. There's no pain but my sense of taste seems to have evaporated. Here's hoping it comes back.

Heat packs are great on the swollen salivaries. I'm sure I looked ridiculous, but I took my bed buddy, a tube filled with rice with handles sewn onto each end, and nuked it for 2 minutes. Then I twisted the middle so that the two ends became heating pads joined by the twisted part. The twist goes under the chin, and the two heat packs lie right along all the salivaries in the neck and face -- lovely. You do have to hold the handles up, and I'm sure it looks ridiculous, but it really worked. I suppose you could tie them, but I don't like to leave it on for that long, and holding the two handles together wasn't that difficult.

Can't wait to get out tomorrow afternoon!

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Sunday, May 29, 2005

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?

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Saturday, February 19, 2005

whine whine whine

I decided this morning to call my endo and see what she had to say. Yes, it is obnoxious to call your doctor with a non-emergency situation during the weekend, however I have had so many problems getting messages to her during the week that I did it anyway.

She agrees that it is an inflammation of my parotid gland.

She doesn't think this is related to my RAI. She expects it to resolve on its own with a little heat, but commented that if it doesn't, or if I start running a fever, I might need a course of antibiotics. She did mention that if it isn't better by Tuesday that I should go in and see her (that's the day she's in the office closest to me).

Honestly, I think she's delusional to not attribute this to the RAI. I made myself a little heat pack out of an old sock and some rice,and it's the perfect size to hold up against my face. The warmth feels good and it did seem to help, but this afternoon it went all spazzy again. Sometimes I get a big rush of salty saliva and it's quite disconcerting.

At Mass in the late afternoon, all the rest of my salivaries started that tingly feeling that usually means you're going to throw up. My stomach is as calm as could be, though, so I know it's just salivary weirdness. The left parotid is starting to ache a little, too, but nothing like the right one -- so far, and I'm hoping it doesn't get any worse.

I've had episodes today of feeling quite unwell -- nothing specific, just general overall ick. I have no idea what's going on, whether it's related to what's going on in my face or my gut or what. Grrrrr.

I slept until 10 this morning and took a nap this afternoon. The major accomplishment of the day was helping DS1 organize his facts and draft his Gila monster project. It is very interesting to see how an 8-year-old's brain works.

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Friday, February 18, 2005

dx

I'm fairly sure of my face pain diagnosis: post-radiation effects on my parotid salivary gland. Here's a picture I'm nicking from the MedLine Encyclopedia:


It's definitely the parotid, the biggest of the salivaries, just under the cheekbone, in front of the ear.

After the movie, I experienced my latest weird symptom: very salty-tasting saliva, but only on the right side of my mouth, on the top. Extensive Googling turned up this article, RadioIodine and Your Salivary Glands. This article is a layman's version of a medical journal article I had found earlier. I would've had to shell out $44 to read the real deal, and probably would've only understood half of it, so I was very glad to find the summary.

Key grafs which I'm trying not to freak out over (emphasis added):

In most cases, immediately after high doses of radioiodine, the salivary glands, especially the parotid glands, become swollen and painful. Alternately, these symptoms can develop months later. In either case, the effects intensify over time.

(I did have "mumps" during the RAI isolation period.)

and:

Other organs known to concentrate and transport iodine include the gastric mucosa, pancreas, lactating mammary glands, chorid plexus and the ciliary body of the eye.

Have I mentioned that I've been getting a pain under my right rib cage, off and on, recently? I was thinking it was just adhesions or scarring from my gallbladder surgery last year, but now I'm trying not to think about what else it could be.

Anyway, I think I will let my endo know that this is happening and see if there is anything she needs/wants (me) to do. If inflammation of the salivaries gets severe, apparently, nerves can be affected and facial paralysis can result (whee!). Wouldn't want that to happen, but I've no idea what, if anything, they can do to treat this or fix any ongoing damage.

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Saturday, November 27, 2004

tired and grumpy

Had trouble sleeping last night. I don't know what the heck I was doing but my left arm went to sleep -- I think I was leaning on it while web-surfing or something? Anyway, it wouldn't wake up and it was really uncomfortable. That put me in mind of hypoparathyroidism, because my hands and feet had all fallen asleep on the massage table earlier in the day, which was just weird, and I couldn't remember that happening before.

Hypoparathyroidism is a condition where your parathyroid glands kick out, and fail to regulate the calcium levels in your blood. The main symptom is that your hands and feet, and sometimes your cheeks and face, feel numb and tingly. The parathyroids are sometimes damaged or shocked by thyroidectomy (the surgery I had), but mine were fine right afterwards... so then I started wondering, did the RAI knock the parathyroids for a loop? What if the cancer had invaded the parathyroids and now they are going out? And the brain started spinning out that scenario...

Treatment for hypoparathyroidism is basically supplementation with calcium (my surgeon: "If you feel a little tingling, chew a couple of Tums and it will subside,"), but of course we don't have anything like Tums in the house. Why? I have no idea, but probably because neither DH nor I ever have heartburn or indigestion because we eat low carb. (DH had a major problem with heartburn before we went LC, and will still have a problem if he over-indulges on higher carb stuff.) Anyway, I freaked myself out sufficiently that I couldn't sleep. I did take a cal/mag/zinc tablet before bed and after a while it did seem to help, and I finally drifted off.

I woke up several times overnight, though -- at one point, my right arm was dead asleep, another time it was my left, it was just so weird... and just now I'm realizing that I have to do something because both my feet are getting that weird numb/tingling sensation. I think I'll have to call the dr about it on Monday and see what they say. I did a web search today and there was a mention of RAI increasing the risk of hypoparathyroidism, but only as part of an anti-RAI posting, not anything I would consider reputable. I should stop freaking about it... I was probably just sleeping all twisted up, as I sometimes do.

I took DS2 up to McCormick RR Park for a birthday party today, and he had a good time. It was nice because it was short: a few games, cake and ice cream, opening presents, a train ride, a carousel ride, then time to go. That was about all I had energy for... it literally exhausted me, and it was only about an hour and half altogether, although I did have to drive up to Scottsdale (about 25-30 minutes), and then of course home again.

My friend who gave the party for her son commented that I looked good... eh. She and her husband both asked me, at separate times, how I was doing, and I always answer either, "I'm doing OK," or "I'm hanging in there," something non-committally positive. I have no desire to go into the details with these people. She made a comment on the phone the other day, "Well, at least they caught it early," and I had to disabuse her of that notion: no, they didn't; they opened up my neck and it was a freakin' mess in there -- cancer everywhere. Totally unexpected. Of course she was taken aback by that, but I really just didn't want to let that one go, and I guess I hadn't talked to her about it in any detail since the surgery. That is no surprise because most of the time when we talk, it's her talking and me being a sounding board. That's OK, it minimizes my stress.

So this afternoon DH took the 3 kids to the park to run around and ride bikes and what-not, and I did my web crawl and looked up RAI some more and staging some more and figured out my staging as much as I could without knowing if there are distant metastases or not, which, it turns out, does make a big difference even if it is just papillary cancer. I won't know until Friday and have to just try not to think about it in the meantime.

DS1 and I went to Mass and I was so grateful that it was not a long service, as I was exhausted before we even left. Then when we got home we all piled into the van and went to Elephant Bar for dinner, which just got on my last nerve. The kids were fine, really, but I am just tired, and grumpy as a result. Too many busy days and a bad night's sleep will do that, never mind having all the cancer stuff to deal with on top of it. I had my usual which didn't thrill me. I don't know whether it's the difference between Saturday night service vs the less busy times when we usually go out, or if it's just that my tastebuds are still altered from the RAI, but where I've really enjoyed it in the past, tonight it was just OK, nothing I'd go back for. The kids loved their sundaes, as usual, though.

It's funny because I intellectually know that there was nothing really wrong, I just didn't enjoy it because I was so drained. Isn't it horrid how we see everything through the prism of our own miseries? It does help to realize that's what's happening, but it's not so easy to snap out of it, regardless.

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Sunday, November 21, 2004

blech

So today was lots worse than yesterday.

I ended up falling asleep on the couch last night and finally woke up around 2AM with both hands dead asleep from how I was sleeping... managed to get teeth brushed and fall into bed about 2:30, as it took some effort just to move at that point.

Got up this morning around 10, and puttered... couldn't eat because of the meds (have to wait at least an hour) and then got distracted, so didn't end up eating until probably 1-ish, which is just so, so bad. I had the last of the chicken and veggies, tasted good, but I had no appetite.

[TMI warning] Then about an hour later, I went to use the toilet and everything apparently went right through me. It was very weird. I'd had a few gurgling noises but no cramping or anything else that would've indicated an episode like that. I'm sure it's a side effect of the RAI. Stuff is dying off inside me, after all. After taht, I've been feeling basically pukey. No actually puking, mind you, just that gross feeling. Ick. [/TMI warning]

DH has been working hard all day, mopped all downstairs, and took both DD and DS1 out for bike riding practice... he is feeling so bad they don't get out more often, but there is only so much one guy can do!

We ended up just getting pizza for them for supper, and I ate a slice. I had to eat something and one slice of pizza is not going to kill me. I figure it was better to eat that than go without anything again, which may be the reason I'm feeling so yucky.

We did bully the kids into looking presentable and took our Christmas card picture:


DD's hair is a little mussed, but we liked the smiles on all 3 of them. It's a trial getting a shot like this, because anytime you point a camera DS1's direction, he starts making goofy faces. It's very difficult to get a natural-looking expression of any sort! So rather than turn it into some day-long horror show, we're just going to go with this one, which is quite nice, after all. I love my digital camera.

Then DH and I put our heads together and scheduled out the week's activities and what we're going to do for dinner each day, so I could plan my shopping for tomorrow. I have to get a turkey! Hee. Way too much stuff to do, but that's just the way it is. And even though I had resolved to hem those pants I bought for DS1 yesterday, I had him put them back on again, and they really are too big around the rise area -- there's just too much excess fabric, they'll never look right. So I went online to 3 or 4 different places and finally ordered him a couple of pairs of pants from Land's End, and a pair of slipper for me. Hopefully they will fit, and that will be the end of this pants nonsense! It's getting on my nerves!

So it wasn't an entirely wasted day, after all. I could've easily spent the entire day in bed and perhaps I should have. I hope tomorrow goes better: it's shopping day, and if the shopping doesn't get done, the rest of the week will be screwed up.

DH will be picking up his folks at the airport on Tuesday, since I'm radioactive and can't go. Tuesday will be cooking day, whatever doesn't get done on Monday, which for all I know could be nothing at this point... we're planning lasagna for dinner on Wednesday, which is a bit of a production, but sooo worth it! I want to have it all put together so that when I get home from the scan I don't actually have to do anything except put it in the oven to heat it up. I wonder if I will have any appetite in the coming days? Dr. L warned me that my taste would be altered and it is, and the appetite thing I think varies from person to person but is not all that unheard of. I'm hoping by Thursday I actually feel like eating some of the nice things we'll have around.

I also researched possible publishers for my book and located a couple, and also want to give the American Cancer Society a call. They have a publishing arm but don't list anywhere on their website who to contact regarding submitting items for consideration. It may be that they only commission their pieces, which is fine. I'll call the 800 number tomorrow during business hours. I didn't feel like dealing with this through e-mail today.

So, it goes. I will get to bed at a decent hour and that will help. Tomorrow will be better.

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Friday, November 19, 2004

freedom!

Although in this case, freedom looks a lot like a ton of housework...

I cut off my "Caution: Radioactive Material" bracelet at 2:30, then I took a shower, and then I cleaned out my iso chamber, which meant wiping down everything in the bathroom, stripping the bed, and washing everything. Four loads of laundry later, I think I'm done.

The kids were happy to see me but mostly supremely unconcerned, which is a good thing, I suppose. I got some good hugs and kisses and then they were off to play upstairs and outside and all over the place. I can say without any qualifiers that they are great kids.

I'm exhausted, emotionally more than anything else. I had a great conversation with one of my best friends back in MA, and we talked up and down a dozen different topics when all of sudden I was on the brink of tears... just came out of nowhere.

This is hard. I don't feel too bad physically, although my neck/throat feel weird. I still feel slightly flu-ish, just a little bit crummy all over. But I don't feel dreadfully ill. I do feel like I've been through the wringer, I guess. Back on meds for 2 days now, and hopeful that they will soon help smooth out these emotional tsunamis that totally overhwelm me without warning. So far it hasn't happened in front of the kids, but that's just because I haven't spent too much time with them.

Dinner was pick-up, clean-out-the-fridge, which was necessary... and still delicious. After that, I'm really not sure what happened to the evening -- kids got baths, etc etc. They really like the sour JellyBelly beans I bought for myself but didn't eat, so they had fun eating those for dessert (10 each! they were so excited. Such a tiny amount, actually.)

I think the high point was just hanging out with DD in her room for a while. She had set the table for a tea party and was very pleased with herself. She had also arranged her animals nicely inside her castle. She has a really great little girl's room, although there is defnitely more work to be done in there... I hope I can find some energy to get it done! It is such a pleasure to see how much she enjoys the things she has. I remembered this evening that her teacher had given her a charm bracelet last year, and I kept it for her knowing it would never last if I gave her to her then. So I gave it to her this evening, and she loved it, and I know she will take (reasonably good) care of it, too. She was so happy to have it, and since it is hers, there was no reason for me to be hanging onto it. It's nice that it is so easy to make them happy.

Off to bed now. DH has a retreat for his RCIA tomorrow, and he'll be gone from about 8 until 3ish. We'll see how it goes here with the kids. I'd like DS1 to work ahead on his homework, because even though there is no RE this week, Nana and Papa are coming and I know he's just not going to want to to do it then!

I can't believe Thanksgiving is Thursday. I am soooo not ready! We'll get there somehow or other.

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Thursday, November 18, 2004

almost normal

I conked out for a few hours this afternoon, much needed, apparently. I feel slightly flu-ish... not horribly sick, just a little icky. My neck feels funny where all my glands are swollen and behind my surgery scar, where I'm sure any thyroid remnants are doing epic battles with the RAI.

And things taste weird... was it too many sour candies, or is this the altered taste that Dr. L warned me about?

About 7:30 or so I pleaded hunger, and DH shoo'ed the kids upstairs for their baths, so I came out and got dinner. DH had brought home Chinese food and even though I wasn't really feeling all that great -- probably because I was so hungry -- I put together a plate of shrimp and broccoli, and put two spring rolls in the toaster oven to heat up. Now, this is most excellent shrimp and broccoli, but my taste buds were just not that into the broccoli... RAI is so reminding me of being pregnant! It was exactly the same thing! The shrimp were really good. The spring rolls were good, too, but the spicy mustard did nothing for me -- I mean, it tasted good, but it didn't give me that watch-out-woooosh! feeling. Hmmmm.

Then I had 2 cups of sweet wild orange Tazo tea which my so considerate DH picked up for me at Starbucks. He doesn't like it, the combination of tart orange with the spearmint aftertaste was too weird for him, but for some reason I'm finding it really delicious. It is tart enough to make my mouth water, plus it isn't bloating me up when I drink a lot. Win-win. Girl's gotta love that.

I have slacked off on the liquid consumption, but I'm well past the 48 hour mark now anyways. I'm still plenty hydrated and will drink more before I go to bed. I'll take another shower, too. I am too cat-like to be good on the shower thing. I don't shower every day. I just got out of the habit when DS1 was newborn and I didn't have the time, and now I just don't see the need. If I have a grungy day and I need to shower, I do, but for the most part I'm sedentary and I have wicked dry skin, so I shower every other day and it works out fine. So I don't like all this getting wet.

The only time I shower every day is on beach days... the after-beach shower, that clean, exhausted, sun-soaked feeling is perhaps my favorite of all. (sigh)

So, I actually ate dinner at the table in my usual seat, and read the paper. Then I watched "In a Fix" and Brit Hume from the TiVO, and DH sat across the cavernous room and watched Brit with me. (During IAF, he was even further across the cavernous room at this very same computer I am now typing on.)

Then he went up to bed, and I surfed over to The N and got the last half of a Daria episode I had never seen before (!!!), in which Daria has a dream that Kevin was murdered and she is investigating it. Very funny, I'll have to keep my eye out for it and TiVO it when it repeats again -- I can't believe I missed it! Now the only one I haven't seen is the "Daria, the Musical," because the listing always says that when it's the episode where Daria gets contact lenses, so I have TiVO'd the wrong ep at least 3 times now. It's permanently screwed up. I need to TiVO the contact-lens ep, but I've yet to catch that one in the listings -- and see if it is actually the musical ep. OK, OK. I've got a thing for teen-oriented programming. Plus I really like Daria, she reminds me of me at that age: smart and out of the mainstream, but successful in my own way. I'll just gloss lightly over the failures, as it's way too late to get into them now, and here? No, thanks.

Slowly starting to think about planning for Thanksgiving. Shopping, cooking, cleaning, etc. Whee! And pie. Must have pie. Maybe several pies, damn the carbs! I'm recovering from cancer, I can have all the pie I want... which of course I will make as LC as possible. Hee!

So I had a pretty normal evening, including surfing on the normal computer, and eating a relatively normal dinner, and watching TV as I normally might, and blogging here as inevitably do. I even feel a bit more normal, bodywise, less bloated. OK: not fat. I've been feeling a panicky "what is going on with my body?" thing the past few days, but whatever it was, it seems to have past. Or passed. Or both. (hee)

I'm getting silly and should get off, I suppose. I'm looking forward to coming OUT tomorrow afternoon and hoping fervently I never have to go back IN. Just a few more hours, OK, more than a few, but less than a day.

Can't wait to hug my babies.

At 2:30PM, I get to take this off and throw it away, and rejoin humanity:


Of course, I also have to take a shower, wash all my clothes and bedding separately, clean the bathroom thoroughly, and dispose of my trash separately as well, but then the Radiation Vacation will be over!

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day 2 in iso

It's just over 48 hours since I took the RAI. I think I have spent at least 6-8 hours on the phone, and probably 20 or more online, since this laptop is my constant companion. The TV in here is not hooked up to the outside world, but once I realized I'd be online, I told DH not to bother with it. I don't miss it, really. I may sneak out and watch Brit Hume tonight in the family room after the kids are all upstairs in bed, though. I should at least purge the TiVO list, which has news shows and what-not for the past week or so... I haven't been keeping up at all. I do so much reading online I don't feel I really need to watch anything to keep up with what's going on in the world. It's such a relief to be untethered from the TV this way.

I had another night of broken sleep, but woke up feeling better anyway. The swelling in my face is down a little bit, I think. It's hard for me to tell. I just took some ibuprofen because I realized I have a headache, probably from muscle tension, holding my head in one position for too long, reading this screen! I have to watch that. Lucky for me, I know some excellent and easy exercises to reset my shoulder and neck muscles when they get all tensed up. Now if I could just remember to do them with any regularity...

Dr L called to see how I am tolerating the RAI. He had a chance to read through the book and he loved it, and encouraged me to pursue publication. That's very cool, huh? Dr M also called, after 9pm(!!!) to tell me it's OK to go back on my T4/T3, same dosage as pre-op, since my last labs showed me as pretty well suppressed before.

I did take them this morning, but I can't tell whether or not I feel any better. Last night I was feeling pretty crummy. Dr L warned that would happen, as the thyroid dies off...hopefully the new T4/T3 coming in will mitigate that effect somewhat. I have to just take it easy and see what happens. When I finish this entry, I am taking a nap!

I've had several great conversations with my older sister, my mom, my dear local friend T, and an old alt.tv.farscape bud who gave me a call today. That last was a surprise but not suprising, you know? It's the kind of guy he is... he has been through RAI before and was sympathetic and encouraging. I know a lot of really nice people.

I've been bouncing around online today, leaving comments here and there... it's nice to be able to do that and not feel like I am neglecting something I should be doing, since there is literally nothing else I have to do. I started writing out notes (longhand... what a trip) for two other books that will not quit pestering me, who knows what will come of that?

Oh, and last night, the Princeton Review sent me an email asking if I would like to audition for their December training sessions. I immediately replied, politely declining and explaining the cancer situation very briefly. I asked about re-applying in the Spring if I am up to it, and the recruiting director wrote back that I should contact her in March. So we'll just have to see how it goes.

Dr M (the endo) is 100% certain I'll need a follow-up scan in 6 months, so that brings us to May. That kind of sucks, because if I need follow-up surgery it will really screw up the summer. OTOH, if I need follow-up surgery, I can do it when all 3 kids are in camp. We can even stick them in aftercare, so DH can drop them off in the morning and pick them up in the evening, it won't be too terribly disruptive. Eh, it will work itself out. I'd just like to make summer plans again... wishful thinking? It's too soon now, anyway.

I've done a lot of writing but no other work while I've been in here, even though I brought in some handwork to do if I decide to watch a dvd. I'm just not in the mood. Maybe I will be later, though. I feel a bit sludgy in my brain now... time for that nap. More later, maybe...

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Wednesday, November 17, 2004

mumps

Having RAI is a lot like having a new baby. You have to force fluids when you're nursing, so you're constantly drinking and peeing. Same deal with the RAI, only moreso. Moreso to the point where I woke up every two hours last night just so I could go to the bathroom -- the broken sleep is another point of similarity. Then I sucked on some Altoids and chugged 16 oz of water before falling back to sleep again. I went to bed about 12ish, woke up 2ish, 4ish, and 6ish and felt absolutely wrecked, so at 6 I gave myself a break and didn't drink all 16oz, and I slept until about 9:30 or so, although I did drift up to the surface when I heard the morning hustle out there.

Since there was absolutely nothing I could do to help, I just let myself go back to sleep.

In that last 3 hours of sleep, all the glands under my chin have swollen up. Yeppers, I'm one of the lucky ones that gets a mumps-like reaction. I'm not surprised, but man, it hurts! It's like TMJ only worse. Every time I open my mouth, tenderness announces itself unpleasantly all along the jawline and behind the joint itself. Ow. I'll have to scout out some Motrin when I foray into the kitchen for breakfast. I can't eat for another half-hour or so because I woke up so late to take my anti-biotic, but that's OK because I'm not hungry anyway, having been swilling candy and water all night long.

I'm about 100% sure that there is more cancer in those nodes, so I'm hoping that the swelling means the RAI is getting in there and kicking some butt. My salivaries are still working great, which is good news. The NucMed dr (Dr L from here on out, I'm tired of typing that out) stressed how important it is to keep flushing them the first day, so I've got to keep up that regimen as much as I can stand today.

It ain't easy. I can see why they'd keep people in the hospital for this, although if I had nurses bullying me to drink and then to pee and eat my candies and whatnot, I would probably want to cry. As it is I've been teetering on the brink but haven't fallen over yet. Wearing my retainer is helping protect the roof of my mouth, so I think I'll keep it in between meals, at least until my mouth heals.

Well, I should see about breakfast. And ibuprofen!

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Tuesday, November 16, 2004

bloat

Oh, I hate typing on this keyboard. I had several nice paragraphs and then hit something and they disappeared! Grrrrr. I'll get used to it.

I'm water-logged. Ever since I took the pill, I have been drinking and peeing, but I don't think I've ever forced fluids to this extent before. It's important to keep flushing the body thoroughly to wash away the excess RAI as quickly as possible. The longer it sits around, the higher the chances of it hurting something else that it is not intended to hurt.

Case in point: salivary glands. Another thing I have to do frequently is suck on hard candies to flush them out, too. The Altoids Sours are fantastic. I have always loved sour candies since I was a tiny girl, and these are definitely the best I've ever had -- except maybe some Norwegian jellies I bought in Oslo, once. But it's not like those are readily available to me at this point.

The Jelly Belly Sours are OK but too small and too sticky to really do the trick. Maybe if I pop 4 or 5 at once I can get a good chew out of them? I'm probably better off with the Altoids. I stick them under my tongue and it's like Niagra Falls in there... excellent! So far, anyway.

The NucMed dr was insistent on this, especially as I took a pretty high dose for my size. He even wants me to get up at least once or twice overnight to drink and have more candy. I don't think it's going to be a problem, because I can't imagine going more than 3 hours without having to pee. My bladder just isn't up to it! (chug chug chug)

I took my first of several showers about 8:30, and used my new CVS lotion. Perhaps it's because of the RAI, which the doctor warned me will most likely alter my tastebuds, but this lotion smells like roses to me, which is my absolute favorite scent. I bought it because it was the CVS version of Lubriderm and it was quite a lot less expensive, so why not give it a try? I smelled it in the store and thought it was pleasant enough, but at this point I really love it.

Then again, I could just be crazy/bored.

I am pretty pooped. I was up late re-writing the book, and then spent about two hours this morning pencilling in the illustrations. It's 24 pages. The NucMed dr seemed quite impressed with it, he took the time to leaf through it a bit this afternoon. To tell the truth, the dr seemed quite impressed with me, which kind of flustered me a bit.

I've been through a lot but don't consider that I've done anything all that extraordinary, but what do I know? The dr said, "I know you'll do well. I don't think I've ever had a patient who was so well-informed and well-prepared." (blush)

I think it's very important to accept compliments graciously, and so I did. I was surprised that the dr actually stayed and chatted with me for 10 minutes or so after I took the RAI: it comes in a little round lead cylindrical box, and there are "warning: radioactive material" stickers all over it. I didn't actually get to see the capsule itself since he didn't want me to touch it, and neither did he -- he picked up the little cup the capsule was in (inside the lead cylinder), and tipped it right into my mouth. It felt small, just like one of my supplements. It was easy to swallow.

About a minute later, the dr took the Giger(sp? I always want to spell it Geiger but I think that is the artist who invented the Aliens Alien, very creepy stuff) counter and measured how much radiation I was emitting. Using a tape measure, at 1 meter I was generating a field of 28 miCu/hour; at 30 cm it was 124 miCU/hour. Radioactivity is a great real-world example of something that operates exponentially.

So then he shook my hand -- I said I would but I didn't think it was such a good idea, and he was supremely unconcerned and said, "Of course I'll shake your hand," and did so. Then off he went, and I had to sit there for an hour, which went by pleasantly enough with me sipping water and dozing. Then I went to the bathroom because the last thing I needed was to have to pee on the way home, when the traffic was going to be bad -- which it was, and I didn't, so that was good.

It's so odd being home and not out there.

DH didn't go back to work as by the time we got home it was after 4. He took them out to Boston's for dinner (pasta and pizza... is there anything on their menu I would even want to eat?) and then I went out to the kitchen and made my own dinner: diced up some fresh Romas, sauteed with garlic and Italian seasonings, threw in the cooked peppers and zucchini: instant almost ... what? brain lock, here... it's a Provencal dish that also usually has eggplant -- ah, there it is: ratatouille. I love it, except I usually leave out the eggplant. Hee.

I threw in some cooked chicken and that was supper. And since I've been swilling water and sucking hard candies all evening, the idea of actually eating anything is pretty repulsive to me. I don't think my body is purging this water as well as it could, which is probably a function of both the hypoT state and possibly the RAI itself. Still, I've seen my ankles lots puffier than they are now. Wonder how they'll look in the morning? My hands are a bit puffy, but not too bad: my rings are not sliding around the way they usually do, but they haven't become too tight, either.

Man, water retention sucks.

I'm blogging in my new pajamas. I love them, but they cost too much. DH really likes them (a lot!), and when I told him I felt guilty about how much I spent on them, he brushed it off immediately. Sweetheart.

It was bittersweet listening to DH help DD read "Hop on Pop" all by herself tonight. I should've started her on the Dr Seuss books earlier, but things have been so discombobulated. At least we've been reading "Little House" together, which is awesome. But she will progress very quickly now. I think she will soon be reading those Little House books herself!

It is lonely to be in a house full of people and not be able to get any hugs, or even pat the cat. I sat in the hallway and DH stood in the kitchen for a little while this evening after the kids were all in bed and we talked a little bit, but it is not very comfortable and there really isn't much going on that we haven't discussed already, since we've spent a good deal of time in the car together lately. He is such a blessing.

Oh: Dr T's office called this morning, pretty much first thing, and said there was a suspicious lymph node -- does not surprise me -- and the dr wanted a CT scan with contrast. I had to explain the RAI/WBS situation to the nurse, and to please have the dr call me if he has questions about it. I will make arrangements to get the U/S results up to the NucMed dr, and to get the scan results from the WBS to Dr T, and then everyone can decide what's going on with that lymph node.

I did ask the NucMed dr about whether or not further surgeries would be necessary, and he said we really have to wait and see what the scan says, and how my blood levels of Tg are post-ablation. I'm going for the scan next Wednesday, after my follow-up with my surgeon, who is right up the street.

It's hard to think that the thyroidectomy was already almost 4 weeks ago. Four weeks ago
I didn't know I have cancer. Four weeks ago, the election hadn't happened yet. A pretty momentous four weeks...

I went to St Mary's with DS2 just after 9 and received the Sacrament of the Sick. It was awesome, in the true sense of the word. Mom told me it would make me feel better. She was right. I think it's wonderful that you don't have to be at death's door to receive it anymore. I can certainly use all the help I can get. These days I do feel buoyed by all the prayers everyone is saying for me. I know they are helping sustain me through this.

I would like to work on my other book while I'm in here, too, but I think I may just veg out....we'll see if the ideas will leave me in peace, or whether they will pester me so much that I have to do some work!

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Monday, November 15, 2004

home for the duration!

The meeting with the Nuclear Medicine doctor today went very well. We reviewed all the precautions and decided that it would be safe for me to stay home!

Hooray!

I'm so happy I could do the Snoopy dance!

We had an excellent consult. The doctor complimented me on how well-informed I was. I laughed later, and told DH I am becoming a professional patient. For now, though, that's not such a bad thing.

Anyway, I've a ton of stuff to do and not much time to do it in, so I may not get to post again until Friday night -- at which point I'm sure my head will be exploding! But I have to be disciplined and get to this stuff now, because as soon as I swallow that pill, I won't have the opportunity to go roaming around the house anymore -- until Friday afternoon, that is.

The only real news is that he's suggesting a 200 milliCurie dosage, which is quite honestly the largest dose I've ever heard of. But considering the mess they found in my neck, I think it's appropriate. I bought 3 tins of different flavored sour Altoids to help keep my salivary glands functioning. M and I each tried one this afternoon and both agreed, WHOA those puppies are strong -- as are all Altoids -- I knew they would do the trick! Here's hoping they do, as having dry mouth can really be a bummer, and I already have enough problems with my teeth.

The NucMed doctor even agreed to look over my kids' book for me! happy happy happy
And, my whole body scan (WBS) will be scheduled on the same day I'm already up in Phoenix for my follow-up with the surgeon, so as to minimize inconvenience.

Anyone who doubts the power of prayer has obviously not been through anything like my recent experiences. This could be such a nightmare, and there have been a few rough spots, but all in all, things are going very well. The dr explained that this first time "going hypo" is not usually so bad because there is some thyroid tissue remaining after the surgery, so I needn't worry so much about how good I'm feeling. See, even that small concern has been lifted.

What a great day. I even bought some cute new winter pajamas to wear during isolation... have to run and get those into the wash now, though. So much to do, so much to do! And then it will be just sit for 3 days, but that's OK.

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Thursday, November 11, 2004

happiness in squeaky wheeldom

So far, so good today:

Got DS2 to Atrium on time, in spite of protests.
Got DS1 to write a most adorable "My Hero of Character" essay during DS2's class, and to work ahead on his Sacrament of Penance packet work.
Got Burger King for the kids' lunch on the way home from picking DS2 up from Atrium.

After lunch, tried for the movie at 12:15, but it was sold out until 2:30, so we came home and hung out until about 2, when we went back up. And we got there just as they opened the doors to the theatre, and we were at the end of the huge line to get it! We ended up sitting in the 2nd-to-last row, which was cool because DS2 was totally fascinated with the projector room (hee).

Anyway, The Incredibles was, not to be completely lame, incredible. Better than Finding Nemo, and that's saying a lot. Simply amazing.

So I got home feeling very good but then when there were still no messages from the endo, I got quite ticked, and broke a little of the No Freaking Out rule.

The kids were outside working out the kinks from spending two+ hours in the movie theater, so I called the answering service for the endo's and ranted at them a bit. I tried, really, not to get too upset, but y'know, I do have cancer, it's not as if I'm being a hypochondriac, and I have left several messages, and what I'm asking ain't all that complicated, namely: labs this week, whaddya think, huh?

So, about 20 minutes later, the lovely, sweet, kind Yolanda called and got me settled down and figured out everything (except where the ball got dropped). Here's the scoop:
My TSH last week was all the way up to 32, so Yolanda thinks I'm probably good to go (TSH has to be at least 40).
She also told me the name of the doctor who will be administering the dose, and said she would arrange a telephone consult with him tomorrow. He will ask me a million questions, and then he will determine whether or not I need to go into the hospital. We have been thinking that it would be for sure a few days in the hospital for me, but maybe not? Who knows?
So tomorrow I will be driving up to Phoenix for more bloodwork, they will do a rapid TSH to see if I'm good to go, and they will try to schedule everything for NEXT WEEK!

Of course, it would've been nice to know that before Mom left, yesterday...
Whatever -- we'll manage, somehow or other. Things will be OK.

I realized I forgot to include the 2 squares of organic chocolate I had yesterday in my eating list, plus I did have another handful of pecans as a snack before bed.
Today's eating:
breakfast: 2 slices of astonishing chocolate cake (no frosting), cup of ginger peach tea
lunch: couple of skinny slices of pork roast, some roasted carrots, leftover chicken leg
snack: Fuji apple
apertif: Guinness. DH opened it by accident (he wasn't paying attention to what he was actually holding) and so I looked it up, and the ingredients are all A-OK, so I drank it. It was yummy. And it's pretty low-carb, too, a smidge less than 10g.
dinner: zucchini, peppers, tomatoes, chicken sauteed in olive oil with garlic and Italian herbs, two skinny slices Italian bread
dessert: 2 squares organic chocolate

The popcorn didn't even tempt me at the movie theater!
Hands again a little stiff this morning, but fine throughout the day. Everything else really seems OK. Digestion has been moving along well which in some ways surprises me. Usually when I'm stressed about something, my stomach goes every which way, and that hasn't happened this time. Maybe because I did my freaking out beforehand? Maybe because I'm eating really well? I don't know, but I'm grateful.

Here's how the scar is looking after 3 weeks:


I do still occasionally feel as if the only reason my head doesn't fall off is because it has been sewn on, but otherwise it's good. My head and neck mobility are fine. The area around the scar is still a little tender. The glands up under my jaw are also still swollen so it's good I'm seeing Dr T in the morning just to get that checked out.

All in all, things are going very well.
Even though I had to freak out a little, it was a good day.

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