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And yeah, I got confirmation from my doctor on Monday that it's going to be an annual thing. Whee!

So last year, I got to go see a new doctor in the newly created Thyroid Cancer Clinic, and he told me I was all healthy and stuff. Go me!

On Monday, I completed the annual Trek to London. Sadly, things were not as conclusive, though they look good. There were two issues:

1) the bloodwork was from an external lab (which they totally told me to do, so grrrr) and the doctor (who was different from the doctor last year) had me re-do it from the St. Joseph's Health Center lab. This meant about an hour and a half of extra time spent in London, and that I have a bit of a wait to see the results.

2) The ultrasound looked good, but they still have to have a radiologist go over it, painstakingly comparing it to last year's ultrasound, before they can conclusively say that nothing's growing.

At any rate, it looks good, no-one's worried, but it wasn't the final "yay, you're healthy" appointment I was hoping for.

Finally, I get to experience the wonders of Thyrogen at some point in the next year. He wants to do a stimulated set of bloodwork, which means I get to go through the fun of sheparding a request for pre-approval through my insurance company, and (over the course of a week) go over to my doctor's office in Guelph (I hope ::crosses fingers::) on a Monday and Tuesday, then go to London again to get the blood draw done. I have a year to do it in.

I now return you to your regularly scheduled Friends page.
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After an absence of almost two years in my journal (last thyca entry was on July 18 2005), I get to again thrill you all with fantastical tales of wonder and delight!

So to go back a little: I had my annual physical on June 6, during which I told my doctor that I hadn't had a followup since the really annoying one in 2005, and that I'd like to, please, this year. So she got my old endo's name and said she'd look after it. I'd also asked for a referral to a dermatologist for the mole check, which is only slightly related.

Two or 3 weeks later, I get a call from the doctor's office: do I remember the name of the doctor, other than "Dr. McDonald"? no, that's what I remember, but they might want to check with the surgeon who sent the referral in the first place. They say thanks, and go away.

Week before last, I got a call from them again. They've made the appointments. Yay! The dermatologist, they tell me, can see me in November. Oy. Expecting the worst for the endo, I listen to her explain that their problem was that they assumed it was the Dr. McDonald at the oncology center down in London. When they discovered that it wasn't, they also discovered that *my* Dr. McDonald has retired. They ended up getting me an appointment for a different doctor in the same department, on July 23. 2007. I was a bit surprised at the speed.

Then on Sunday, my mother handed over the letter that had arrived there from the London Health Sciences center; not only do I have an appointment with the endo on Monday the 23rd, I also have an ultrasound earlier in the day and bloodwork. Which of course reminds me that I never did the bloodwork that the family doctor ordered. Yesterday morning, I was lucky enough to get a technician who couldn't hit the vein in my left arm and so had to go to the right (after making absolute sure about the left).

So on Monday, I get to head over to London, have another boring ultrasound, and find out whether the endo wants to do any more invasive testing (which is to say, take me off my meds, though I'll be calling the insurance company to see if they cover the thyrogen. Cross your fingers).

How fun is all that, really? Super fun, I'd say. So wish me luck on Monday that my thyroid bed remains empty and my blood tests come back with good numbers.


Jul. 18th, 2005 10:55 am
hel_ana: (penguin)
I'm still alive. The job is still great. I love my husband and my kids.

Apparently, happiness and contentment make for a hella boring journal. C'est la vie.

We had both kids over for the weekend, and took them to see Charlie and the Chocolate Factory. I enjoyed it, as did Ross and the kids. I must admit, however, that the coolest movie I've seen in the last six months is Mad Hot Ballroom. If you get the chance, see the movie.

My mother got my copy of Harry Potter and the Half-Blood Prince at midnight on Saturday, since she was driving home from my aunt's place. (Which reminds me -- K&A, the cloak is now at Aunt P's, and I need to email her to let her know who's likely to be by to pick it up. If you want, I can give her both your names and descriptions.) It's in the mail. However, I was weak, and when Ross suggested getting a copy of the American version on Saturday night, I caved like a house of cards stomped by a 2-year old. I enjoyed it very much. I'm going to donate the Scholastic version to the local library. Of course, I haven't admitted to my mom that I got the book here; I am Adrienne's inner 10-year old.

I got the bloodwork results back, and they're acceptable (Tg = 1, TgAb = 17, which is higher than I'm happy about, but then, I don't know what testing method they used, and it can affect the results). At least, the idiot doctor didn't see any problem with them, since I had to call to get the results.

Pennsic is positively looming, which means I need to spend more time sewing. Immigration stuff is moving ahead. We need to get some forms from the IRS before we can fill out the current slate of paperwork. Whee!

That's all.
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At least on the scan (had the blood draw at 11:30 for the bloodwork, so it'll be a couple days before I get that back.)

Scan was clean. The remnants from the surgery last year were killed off by the RAI last year, and I have no thyroid tissue, which means no thyroid cancer.

Now, if you'll excuse me, I'm going to go resume my relationship with a couple of little pills I like to call "Uni" and "Cyt". Oh yes. And take a nap.
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Defeated office staff of Endo_dork. Came away with order for tests and sense of superiority.

Swallowed pill at 10:45 am. No Superpowers yet. Still not King.

Headache. :(
hel_ana: (Default)
Or, at least that's my assumption. Because I don't see any other reasonable explanation for my TSH being 2.13 on June 2nd and 83.2 on June 9th. It just makes much more sense for it to have been 21.3 on June 2nd, and some transcriptionist just made a mistake.

Of course, the possibility that they tested someone else's blood exists, I suppose.

At any rate, I go nuclear on Monday morning, and have my scan a week from tomorrow. Now all I need to do is wrest further orders for thyroglobulin and thyroglobulin antibodies tests from my doctor (his receptionist seemed to think that it would be a good idea to wait 2 weeks after the scan to do those tests). Keep in mind that for those tests to be effective, I need to be off my medication. For those keeping score at home, waiting 2 weeks would involve being off my meds for 10 weeks. To me, that sounds somewhat unreasonable. Call me crazy, but no-one needs to have me walking around with a TSH in the 3 digits, thank you very much. Certainly, I need to stay off the meds for a few days after the scan, to make sure that I don't need to have an ablative dose again. But two weeks? That's nuts.

Can I go back to bed now?
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I got someone to actually talk to me from the endo's office. I'm going back in on Thursday to redo the TSH test, in the hope that it was lab error.

Or in the hope that it'll have at least gone up *some*.
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It's ironic that the first letter to the editor in this morning's St. Pete Times came the day after I realized how incredibly poor the care I'm receiving right now is, in comparison to the care I received last year in Canada. (First of all, I am incredibly suspicious of anyone who says "the Canadian system ran out of money in December", given that each province has its own health care system. Obviously, he's ignorant enough of how it works that I really question the veracity of everything he's saying. And since my mother's worked in that system for thirty five years, I think I'd remember her coming home one day in December and saying "I don't have to go into work for the rest of the month". That never happened. I'm calling bullshit.)

So anyway. I went in yesterday to get bloodwork done in preparation for the planned test on Monday/Thursday. I've been off my meds since late April. Six weeks. I was told by the hospital scheduling people to come in on June 2nd for the bloodwork. So in I toddled, only to be told (when I asked) that the results wouldn't be back for 3-5 business days.

I started screaming bloody murder. I phoned both my doctors, I went over to radiology/nuc med, I phoned nuc med and left a message, since they'd left for the day.

Good thing too. I got a phone call this morning from nuc med, in which we started to get things sorted out. The nuc med unit secretary phoned the doctor's office, and then phoned me back. The results were already back, which is good.

But my TSH, after close to six weeks off meds, is 2.13.


It needs to be >30.

So, needless to say, I won't be having the procedure next week. We're tentatively rescheduled for 2 weeks from Monday.

And yet, if I'd just been a sheep, if I hadn't kicked and screamed and kicked and screamed, I would have gone in on Monday, swallowed the pill, and then found out that it wasn't going to do any good.
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I just got home from London. The scan took about half an hour, and the consultation about 15 minutes.

It's really good. I'll get to how good in a minute, but ya'll need to understand the whys in order to understand how it's good.

To give you the necessary background: In the treatment of thyroid cancer of the type I have, they generally *do* two things, and measure the success of those things with a variety of methods.

I've talked here, ad nauseum, about the treatments - first the surgery to remove the thyroid and tumour, and then the radioactive iodine to kill any remnants that the surgery couldn't get. And there are pretty much always remnants, because surgery isn't done at the nanotech level yet.

So today, we moved into the "measure the success of the methods" portion of the program. Generally, these are:

1) Scans of the uptake of radioactive iodine. In today's case, they looked at what was there, and where it was, from Friday's big dose. Frequently, there is annual followup with tiny doses (like last Wednesday's) to make sure there's nothing glowing.

2) Thyroglobulin levels (Tg). Thyroglobulin is a protein that is only generated by thyroid tissue, whether healthy or cancerous. Thus, if it's present in any detectable level in the presence of high TSH, there's *something* there. In a post surgical, post RAI patient, they assume it's cancer.

3) Thyroglobulin antibodies levels (TgAB). The abnormal body's response to thyroglobulin. All of you have Tg, but most of you don't have immune systems that freak out and decide that it's an Invader. The reason this is important is two-fold.. the presence of the stuff can lead to incorrectly low Tg results. The presence of TgAB pre-surgery with a reduction post-surgery/post RAI indicates that there's no more thyroid, healthy or otherwise. If the TgAB stay the same, or increase, there's obviously *something* there, and again, they assume it's cancer.

I tested positive for TgAB pre-surgery - in fact, that's the result that alerted my primary physician to the problems.

4) Ultrasound - they take a picture, they compare it in a year. Nothing new = good, something growing = bad. Fairly simple.

Now we get to me, and today's results.

The two remnants that showed up the other day on the first scan are all that's there. They're tiny, and will be gone soon (because it can take a few weeks for the RAI to completely kill them)

But there's nothing outside the thyroid bed, and the doctor was really impressed with the job the surgeon did.

Most importantly, my thyroglobulin levels are undetectable. Also, the thyroglobulin antibodies that I had *before* the surgery are now gone, which means there's nothing there for my immune system to react to.

So the doctor says we're pretty much in the clear. I asked about a followup scan next year and he said that he would consider that overkill. Of course, my doctor in Florida may disagree, and I'm not entirely sure that I'm completely comfortable with that, but the doctor was *really* positive. He suggested that if I stayed with him and Dr. M, they'd be content to take an ultrasound now, and compare it later.

So I'm good. Really, really good.

There aren't really words to describe it. I've been feeling almost exactly the way I did when I first saw the approval notice online back in November.

Thank you all so much for your love and support. It's meant the world to Ross and I.

Also, it was wierd to see my stomach on the scan. So *that's* where it is. ;)
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I just ate a toasted bacon and tomato sandwich.

It doesn't sound like much, but to me, it's heaven.

Not only was it tasty, and not LID, it reminded me of being a kid on Sunday morning, when mom and dad would make b&t sandwiches after church, and we'd sit around the table eating and being a family.

It really, truly is the simple things.
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Mrs. Winn would like to announce that she is now, once again, medicated.

Yay! Granted, it'll take about 4 or 5 weeks for it to completely kick in, and by that point I'll probably be on a new dosage. But that's ok.
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So I'm home, I'm fed, I'm required to stay 1 meter away from other human beings until Sunday night.

But that's ok, because I can talk to people.

Today was pretty much as expected. For those what knows about such things, my dosage was 100mCi. Not a huge dose, because there were only two spots that glowed on the scan of the uptake from Wednesday.

I got there early (cool) and got in early (cooler). I have a prescription for going back on T4 on Sunday (coolest).

I drank the stuff, then between 11 and 4, I drank 4.5 litres of water. Ugh. That part was pretty awful.

Worst, though, was the lack of a time check -- I didn't bring a watch, and there was no clock in the room. So the only thing I had to go on was the mounting number of empty water bottles and my progress through the books I brought, which was variable. I didn't know how much longer I had to go at any point, and that deeply sucked.

However, it's over, and I'm left with slight soreness in my cheeks, an aversion to water, and a need to sleep. Oh, yes, and a deep seated desire to see my husband.

My dad's the coolest -- he met us at the door with food, and support, though of course no hug.

So i'm doing fairly well, though I really don't want to do this again.


Mar. 17th, 2004 09:55 pm
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started too early, but made me feel a lot better about the whole situation.

We got there early, and waited for almost an hour. I finally met the doctor (i'd talked to him on the phone, but we hadn't met face to face). He went over the steps going forward, and answered the couple of questions I had.

He also told me that I get to go off the Damned LID and go back on medication on Sunday. Yay! Toasted bacon and tomato sandwiches for me!

He also looked at my skin and said "well, you aren't *too* hypo.. some of the really hypo patients I get you could strike matches on their skin". Yuck. Something to not ever look forward to.

Then I had to have blood drawn. Six vials, because in addition to all the normal tests, they had some wierd ones, and a pregnancy test. (Surprising no-one, the pregnancy test came back negative, though if it had come back positive, I'd have had to conceed an act of God and admit that the universe *really* didn't want me to have the RAI.) Because they won't proceed without a negative pregnancy test, my father and I had time to go to lunch. We got back before the test results, so had to wait a bit.

Finally, I found myself in the basement along with a lot of lead, a tiny beaker with a miniscule amount of liquid in it, and a straw. I sucked the stuff up (fortified with water), and we were on our way. I did get to talk to the lab technician, who was a great source of information, and the conversation made me feel a *lot* better about the whole thing.

As it turns out, at this point I'm "just barely a bit radioactive girl", which is fine by me. I'll be more radioactive on Friday, but by how much won't be clear till friday morning.

Basically, I have to go back, they'll scan me, then feed the results of a scan into a program which will determine doses and lengths of precautions (based on the dose, x # of days till I can share a bed or kiss someone, be around small children, etc, etc) Then I'll spend Friday afternoon in an isolated room, reading, drinking water, sucking on sour lemon candies, and peeing. Lots. Apparently about half the radioactive iodine will be out of my system, down the toilet, by the time I leave that afternoon between four and five.

Then I spend the weekend by myself, and I go back on Tuesday for a Whole Body Scan, wherein they determine what's already been killed, and what still remains to be killed, and establish a baseline for my first scan dose next year. (Apparently the stuff can continue to work in your system, killing off thyroid cells, for about six months.)

We also establish the treatment/maintenance program going forward, based on the scan and some of my hormone levels.

So it's all good, and I felt a lot better emotionally after I finished. Exhausted as all hell physically, but that's not surprising.

Did I mention I get pizza on Sunday? And go back on my meds?
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hel_ana: (Default)
Had an anxiety attack at 1am over what to wear at the wedding, since my first choice is going to take significant work to pull off, using time and energy I don't have.

Found an option that I don't hate. (Note to Arnora: do you have some type of wrap you could lend me, either in black or in bluey greens, suitable for the affair on the 27th?)

Woke up this morning (before the alarm) mildly anxious about the synopsis of a movie that isn't, as far as I know, being made.

I suspect I'm transfering worry about the big scary thing to little, not scary things.


Used the extra time to strip the bed, put the featherbed aside, and remake the bed with the surgical sheet protecting the mattress. Switched out the pillows, so the floofy feather ones won't get contaminated over the next week.

With extra meh on top.

Now, I'm off to slice up a lemon, just to watch it die.

Wish me luck.
hel_ana: (Default)
And today just owned me.

I got *no* packing done. I'm cold as all hell (not surprising since my resting pulse is back down to 58), and I slept a whole bunch today and couldn't get up when I wanted to.


I did, however, get a copy of The Cat in the Hat DVD for 16 bucks canadian plus tax for John.

I'm going to go get my bathroom ready for Radioactive Girl. Tomorrow is my tracer dose (they give me just a tiny amount so that they can scan on Friday before the big dose. This gives them a more accurate picture of how much tissue actually needs to be ablated and thus how much RAI I actually need to swallow for that to take place. Because, really, you don't want to be drinking more of the stuff than you absolutely need.) Whee!
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I just got a phone call from my doctor. My TSH was 55 yesterday. That's more than enough to go ahead with the radioactive iodine on Wednesday, and it'll undoubtedly climb between now and then.

Thanks everyone who had their fingers crossed for me.
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::Positive thoughts for 'nora *not* being a plague infested rat::

And a request for positive thoughts for a high TSH test result for me today.

(There's an amusement value in there somewhere, that I'm hoping for abnormal testing for myself, while wishing for normal tests for her. But it's early and I'm very sleepy.)

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I just got off the phone with the nuc med doctor.

Apparently the good wishes of my Irish friends have worked magic, and I've got a date of March 17th to go in and have the tracer dose. At that point, we'll also do other bloodwork.

I'll go back on the 19th to take a big dose. I'll stay there the whole day, and then go home in the late afternoon. I don't have to be in isolation, since I have a room I can stay in and a separate bathroom.

I'll go back, probably on the following Tuesday, for a whole body scan, and a discussion of what they find in that scan.

The upshot is that I'll be done this stage of the process by March 23. I can go to the wedding on the 27th, and I can leave anytime after that.
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So I got the grease.

I woke up this morning at about quarter to eleven, came downstairs, and noted the blinking light on the answering machine.

Apparently, the secretary at the other office did indeed put my file on the top of the pile, because one of the messages was the nuc med doc.

I phoned him back, but he was in a meeting, so now we're engaged in a game of telephone tag. Squeak squeak, is all I have to say.

It's funny.. there's a very large part of me that doesn't want to do this. So while one part of me is glad he phoned, another is wishing he hadn't. Or hadn't had to, more correctly.
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