1 August, 2001
I had my appointment with the endocrinologist this morning. No poking or prodding or bleeding, this time around, but I got some answers about where we go from here.
He seems pleased with my recovery to date and confirms that I'll be off my hormone pills until August 13. At that time, I'll go to his office and take my "magic bullet", which is how he refers to the I 131 treatment. No goop to swallow; no hospital stay. Apparently, they only use the high doses of radiation that require hospital isolation in cases where the cancer has spread to a larger degree. Since papillary thyroid cancer spreads to the lymph nodes, when it spreads (as opposed to spreading in the bloodstream), and since the surgeon found only one positive cancerous node, they're going with a "therapeutic" dose (i.e.,the magic bullet).
For the most part, I'm not having to change my lifestyle or diet, aside from staying off my thyroid meds. I don't even have to change my diet, though he advised to keep a tight rein on salt intake and to stay away from fast food burger places. For some unknown reason, he says, they have a lot of iodine in their food. Anyway, I take my pill and then go back to be scanned a few days later, on Friday. Once that's out of the way, I'll go on my long-term thyroid medicine, and the next event will be another tracer scan at about 6 months.
He mentioned some other tests and things involving something-globulin and synthetic THS to avoid having to come off the meds for subsequent tests, but it's all a lot ot absorb at once, so I'll just take it as it comes.
He also had some enlightening things to say in response to my question about the NDA process that Synthroid is going through. I asked because this is a common thyroid hormone and the one that I probably would have been prescribed, but after my question, he seemed to think that he might put me on something else, just in case, to avoid any chance of having to re-balance my dosages, in the unlikely event of supply shortages.
14 August, 2001
I went in for my radiation pill yesterday. As predicted, it was pretty much of a no-brainer: I sat around for about half an hour before taking a white, half-inch-long capsule with a shot glass of water. The nurse took a vial of blood, and I was out the door.
Other things I learned:
- My full body scan is this coming Friday, at 1:30.
- Barring that the scan reveals thyroid tissue or cancer tissue activity, I'll be allowed to go back on my medication on Friday, after the scan. It sounds like I'll initially take the five or so Cytomel (short-term) tablets I have left from the post-op phase, to be followed by starting on my long-term Synthroid or whichever alternate brand name is prescribed.
- The nurse told me that my dosage would be set a bit too high, at first, by design. This is fine by me, since I had joked about asking the doctor to do this so I could drop five or ten pounds that I've been wanting to lose. Then, I suppose, my dosage will be adjusted down, over time, until it is balanced to the doctor's satisfaction.
How do I feel? Draggy. I feel like I have small weights strapped to my arms and legs, and I tend to stare into space a lot--but then, the staring into space isn't really a change from the last year or so. It really makes me wonder just how long I've been like this and had simply adapted to it. I'm also somewhat depressed (also not unusual), so [Turtle] and I try to steer away from talking about important but frustrating topics like my job hunt and our struggle to be together. Once I'm on the meds, I'll be able to talk about these things without spiraling into insane, defeatist rants... but not now.
17 August, 2001
I went in on August 17 to have my full-body scan. There was no additional cancer found in my chest or lower abdomen, which is good, but there were two new (or previously-undiscovered) cancerous lymph nodes that showed up. They were glowing brightly with radiation, however, and the doctor says he expects to see no activity there when I have my next scan in 6 months.
In the mean time, I'm on my long-term thyroid medication now, and I have a follow-up office visit in October. I suppose that will probably be just to draw blood and check to see that my medication is at the right dosage. Basically, it's back to business as usual, which means turning my attention back to either finding me a job in St. Louis or finding [Turtle] one in Dallas so we can get this show on the road and be together. =)
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4 comments:
I'm dealing with endocrine system issues and it is comforting to know I'm not alone. It's a chore in how much you have to immerse yourself in the medicine to know what is going on, at least for me.
Again, so glad this is behind you.
@bee: I'm sorry to hear you're having trouble, but I'm glad you're finding some interest in the series of posts. When I found the file on my computer recently, I almost deleted it. Then I thought, Or I could post it on the blog and maybe someone else can benefit from my experience. Someone who's just gotten a scary diagnosis and needs to know that there's a future.
Foo, that's exactly what I was thinking as I read these posts...Bobkat (on my blogroll) is currently going through what sounds like a very similar situation...I'll send her your way. My own thyroid problems haven't resulted in cancer yet, but I am "at risk" and appreciate these posts.
Bee & Gynee, Turtle (Foo's other half) here.
Whatever physical ailment a person has, they SHOULD immerse themselves in knowing what it's all about. Doctor's know only so much, and it's up to us to communicate it to them in order for them to make a diagnosis. But if you don't tell them everything, how can they? How often have you watched the TV show "House" and the patient doesn't tell a key bit of info? Know as much as you can, keep records of your own, ask for copies from tests performed, and put them in a binder that you take with you whenever you visit your doctors. Believe me! It's invaluable!!! And if you have a doctor who thinks otherwise, get a new one. They're not God. That position is already filled. They're human and prone to error.
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