Limbo (not the game)

Another brief update here to mention that my endocrinologist hasn't gotten in touch with me. Which isn't as uncool as it might sound, since I actually have an appointment with him this coming Monday. (The first in several months, only the 2nd since the surgery.) I had just assumed that he would touch base with me before we met. Eh.

So Monday morning I get to ask any questions I have, tho at this point I don't have many. I may ask about a few random symptoms. (I don't actually list every single symptom on this blog, which is for the best I think since it's probably boring and possibly unrelated to thyroid issues, anyway.) I never got any vitamin D test results this time 'round which just drives me crazy - isn't it natural to expect that after starting a new supplement to correct previous test results?!

Oh well. Off to see a movie tonight - watching "A Single Man" at the Castro. I've seen it before, but can't pass up the chance to watch it in those surroundings.

Updates

Yikes, four months since my last post! Well, for the most part, no news is good news - nothing has seemed interesting or traumatic enough to write about lately, and that's a good thing.

Only two complaints: Since the radiation treatment I have had more stomach aches than I ever recall having before, but it's really hard to prove that the two are connected, and it's nothing crippling - just the occasional sharp pain. All I can say is that I hardly ever had stomach aches before December, now I have them a couple of times a week, regardless of the food I eat. (Tho I do feel I've been having them less often lately.) Secondly, something that had cropped up in my past (once before my thyroid drama, once right after surgery) has come back to annoy me: my lips are super chapped all the time and peel like crazy. Maybe it's stress-related, maybe hormonal, I don't know. But again, it's mainly an annoyance, and I probably should just make an appointment with a dermatologist.

I mention these relatively minor things to point out how little things have changed with me in the eight months since my surgery - the eight months I've been without a thyroid and have depended on my daily pills. I don't love taking the pills, but I never expected to, and it's certainly become a habit - so much so that I still fear forgetting sometimes. It's such second nature to take a pill first thing in the morning that sometimes I can't remember if I did it or not. Oh, human brains.

In early February I took my first blood test since the RAI therapy, and the results weren't totally ideal. For the first time ever, it showed less-than-optimal thyroid hormone levels. (As a reminder, the RAI scan came back clear, so theoretically I'm cancer-free: the blood test mostly gives me an idea of thyroid stimulating hormone [TSH] levels, thus guiding how much medication to take.) My doctor wants me to be under 1.0 uIU/mL, but I showed a level of about 7.5 (my highest ever pre-drama result had been 1.9, and after surgery I was at 1.22) - so I had to up my thyroid medication dosage. That was frustrating, since I'd gotten used to coasting along at an ideal TSH level. I started taking 125mcg in February, and made plans for another blood test after a couple of months. (For better and worse it takes forever [i.e. several weeks] for TSH levels to change.)

That next blood test happened last Thursday, and so far results look good. My TSH level is at 0.51 so I expect to not have to change my medication. Tho maybe that's in the "too low" range - I don't know. I haven't heard back from the doctor yet - I expect that email will come in a day or two. My vitamin D levels were low in my previous blood test, so it was recommended I start taking supplements. You can imagine how thrilled I was to start taking another pill. (Not very.) I haven't seen any results yet re. vitamin D from this blood test, and I'll be bummed if the doctor didn't order that - I want to know if this supplement business is making any difference, dammit!

But again, I have felt more or less fine & normal throughout all of this. Some days I'm tired, some days I have a bunch of energy, and ultimately the most direct link I can find to any of this is that I need to get plenty of sleep if I want to feel good. I know, what a revelation. I'm constantly amazed how how well my body has been able to adapt, to surgery and to random amounts of radiation and thyroid medication being thrown into it. Some of it might be positive mental vibes, but I think I was really lucky to get this particular model. Keeps on ticking! Which is good because I'm sure life has plenty more in store for it.

I'll update again once I hear back from my doctor.

A delicious Sunday breakfast at home in March. Baked beans, eggs, toast w/ mango marmalade.

Happiness!

My doctor called today: The scan shows no sign of cancer! I've obviously still got radiation in me (ick) but no thyroid cancer lurking anywhere. HUGE relief.

It's not the end of the saga: I'll be monitored for the rest of my life, since it could decide to return anytime. But it probably won't, and this happy news is definitely great for my morale.

Yay!

(photo from iheartguts.com - they are amazing.)

Radiation is FUN!

It's official, I'm still glowing from within - I've seen the pictures that prove it. I took the radioactive iodine pill on the 23rd with no ill effects, as far as I can tell. It was a pretty quick process. We went to the Nuclear Medicine Department at the main Oakland Kaiser hospital, waited a few minutes, then I got taken to a generic room by a really nice (and burly) male nurse. A doctor came in and verbally notified me of the basics: drink lots of water for the next day or two, and try to keep the saliva flowing. (To reduce the possibility of blocked salivary glands, and to lessen the amount of radioactivity that might pool up in my head area.) I also needed to avoid other folks for the next two days, but I was prepared for that. They never had me sign anything, which was odd (especially since they sent me my medical report in the mail a few days later and it said I had signed forms stating my understanding of the situation. Hm.) Then I got to swallow the pill, which up til that point had been stored in a neat little metal container. No-one was dressed in a hazmat suit, which made me feel a little better, and it was an outpatient procedure. Great, super, but it's still REALLY STRANGE to voluntarily swallow radioactive anything. I wore the shirt you see here, to the delight of the Nuclear Medicine team. That's me, making those doctors laugh! (It really helps me tho, when I can keep the mood positive. And I like happy doctors.)

The past week has been pretty laid back. I had those two quiet "alone time" days, then was away from work thru most of the rest of the week - which was Thanksgiving week, so no big deal. The most exciting parts of the week involved eating: Wednesday was the first day I was allowed to stop the low-iodine diet. I ate moderately for lunch (an avocado club sandwich at Rockridge Cafe, followed by some frozen yogurt at Tutti Frutti) but really kindof went overboard at dinner. (Delicious Thai food.) Stomachache city. The next day was Thanksgiving, and while I didn't attend an actual dinner (still pretty radioactive) leftovers were brought to me, and..... I ate too much. Ever since then I've been trying to make it up to myself by taking it slow & eating as sensibly as possible. Not fun per se, but at least I feel like my digestive system is starting to function normally again.

I think that there was a time in the middle of the week there where I was finally feeling somewhat hypothyroid - meaning my digestive system had slowed down right when I was piling all this food into my belly. I had just restarted taking the pills, but it takes a week or so to notice any real effects from those. I seem to be on the right track now.

Today I had my scan, to see if there's any cancer left in me. This has been far more stressful than I thought it'd be. Not worried about the actual scan procedure, just concerned about what the results could be. I'm fairly confident that I'll be all-clear, but...... well, it feels like I have something akin to post traumatic stress disorder from my cancer diagnosis in May. I was so cavalier about having that second biopsy as a "formality," then it turned out that I had cancer. So now I don't feel like I can be cavalier about anything. And the worry just totally sucks. If I'm clear, great. If not, worst-case scenario, more surgery. N-O-NO DO NOT WANT. I am not going to take that news gracefully. But I don't think that will happen. Argh.

The scan itself was pretty easy, and everyone was super nice; there really are some friendly people working at Kaiser. That same burly nurse came in while I was lying immobile in the scanner and joked that he wished he had a feather with which to tickle my nose. Smiling real big had to substitute for laughing, since I wasn't supposed to move! Crazy folks. And the tech who operated the machine let me look at the images, since I had asked if I could get a printout (answer: yes, after my doctor gets a chance to review the results.) It looked beautiful - very sci-fi. When he adjusted the exposure (via sliding bar on the computer) the radioactivity made my body look like it was made up of hundreds of stars, with a slightly stronger concentration in certain organs. My throat shone out like one massive star. It was gorgeous, yet creepy, and I ooohed and aaahed over it.

Ultimately the combination of being cheerful and positive while feeling terrified pretty much wiped my brain out for the rest of the day. I gave myself the gift of a grilled cheese and frozen yogurt afterwards. (Gratefully accepted.)

I should have results in about two days. Oh joy!

In It To Win It

OK, I am officially frustrated with this diet. BUT - I got my blood test on Thursday, and the results look good: I am all set to swallow a pillful of radioactive iodine on Monday at 9am! Maybe not everyone's ideal Monday-morning activity, but at this point I'm almost looking forward to it.

I started the low-iodine diet on the 2nd, stopped my meds on the 11th, and had that blood test on the 19th. I was rushing things a bit - most people going thru this process are off their medication for two weeks before going in for the blood test, but my doctor seemed to think it was fine. After all it is just a test, and my copay is low enough that I was willing to give it a shot. I'm determined to enjoy as much of December as possible, and getting this over with is my top November goal (actually probably my top goal of 2009.)

The test measured my TSH level. TSH is thyroid stimulating hormone, and is basically your body's way (via the pituitary gland) of saying "Hello, I need more thyroid hormone over here!" In people who still have their thyroid it only takes a little TSH to get it going, but if you don't have a thyroid it just keeps on climbing as long as you deny your body the hormone (in the form of a pill.) Pre-surgery my TSH level hovered somewhere around .5 to 1.5. The goal this past week was to get it up to 20+.

The expectation was that the longer I was without thyroid hormone the worse I'd feel. Tired & sluggish, cold all the time, and other gross symptoms. It sounded awful, but was apparantly a necessary part of the process. My body surprised me again, tho, and I've been feeling great! A little tiredness here & there, but nothing unusual, and no other observable symptoms. I'm excited and pleased to have such a hearty constitution.

The blood test resulted in a TSH level of nearly 24, so plans have been made for a Monday morning RAI treatment. I'll walk into the hospital, swallow a pill, and go home. For the following 48 hours I'm supposed to stay at home and limit contact with people to 30 minutes max. Then for the next 5 days I have to basically avoid getting my fluids on things that can't be washed. But that's pretty much the extent of it. So much better than the 2-week isolation the Internet had led me to expect. Thanks a lot, Internet.

The most glorious part: At the end of that first 48 hours I am allowed to stop this low-iodine diet!!! Good thing, too: Last night I was nearly overcome by the feeling of longing brought on by a photo of a grilled cheese sandwich. I'm a model vegetarian, but I am not cut out to be a vegan, unfortunately.

On December 2nd I go in for a scan, to see if there are any bits of thyroid cells or cancer left in me. If so they will glow due to the radioactivity. We're hoping for a clean scan, and I have every reason to expect this will be the case. Once I get those results back I can get on with my life. Very much looking forward to that.

My lab result from Kaiser:

I'm Hungry.

Friday October 30th I talked to my doctor, and got the ok to start my low-iodine diet a week earlier than the plan had originally called for. So last Monday was day one: and of course I wasn't really prepared. Turns out - hey! - a whole lot of food items have iodine in them! I'm a vegetarian, so I'm used to saying no to certain types of food, but now I can't eat egg yolks, dairy, soy, sea salt, and a variety of other seemingly random food. (Potato skins are apparently a no-no, but the insides are fine. Rice is debatable.)

Fortunately I can eat fresh fruits & veggies, most grains and beans, and kosher (non-iodized) salt is perfectly fine. Thank goodness I don't have to do this on my own: ThyCa's Low Iodine Cookbook has been crazy helpful - I've included a link in the sidebar if you want to download your own copy. It's 90 pages of helpful tips & recipes that have really saved me this week. I thought I would be ok with just cooking vegan items, but there are so many potential iodine pitfalls that at least in this early stage I'm happy to rely on a book that I know is completely safe.

I've been slowly gathering food this week: the photos here are of my new giant box of kosher salt. Since you're supposed to avoid any salted items on the chance that it is iodized, I went for two days without eating any salt - my body was sooooo happy when I finally gave it some sodium!
But the key word above is "slowly" - I am remarkably bad at feeding myself. I enjoy a tasty meal, but often can't seem to plan ahead of time in order to cook for myself. I got my act together on Wednesday: read up on a few recipes and went on a little shopping spree at Whole Foods. I should be set for the next week or so.

In a way it's fun: I like a challenge, and picking out the foods I can eat has been a little bit like a game. I've gotten better at remembering to read the lables on all packages of food, tho I slipped this weekend when I used some hot sauce without checking to see if it had salt in it. Argh.

What I miss most:
Eggs, ice cream, milk, cheese, butter (etc.), crackers, salted sunflower seeds, and the ability to just grab something from the cupboard and eat it without checking first.

Positive things:
I can drink pretty much all sodas, juices, and alcohol! And (previous items notwithstanding) this is a pretty healthy diet, what with the fresh foods and the careful monitoring of ingredients. I'm incredibly lucky to be living in an area with so many wonderful grocery stores. I've found several items at Whole Foods that I'll probably keep on eating after all this is finished, am looking forward to spending some time at Berkeley Bowl, and have rediscovered my love for fresh-ground peanut butter.

The Next Level

Ah... been a while. Laziness and a lack of anything new to report are mostly to blame. Things have been pretty good: feeling fine, not really getting around to exercising, eating better in fits & starts, you know, the usual. I'm slightly worried about hair loss, since I feel like I might be coming away with a bit more hair after I comb out my post-shower tangles, but honestly it's hard to say. I don't think it's really a big deal, and if it were it'd be more noticeable.

I am launching into a new treatment phase, tho: Preparation has begun for my radioactive iodine (RAI) therapy. When I met with my doctor last a plan was sketched out between us as to how we'd proceed so I would be most likely able to celebrate all the upcoming holidays. We were going to start getting ready in early October, and hopefully be all wrapped up by Thanksgiving.
Unfortunately, I was under the impression he would contact me (the first step was to switch my medication, so it seemed like he'd initiate that), but that never happened. It's partly my fault, since I was still uncertain whether I wanted to go thru with it. Long boring story short, I got ahold of him last week, and we started in on the whole plan a bit later that I would've liked.


Here's how it will go:

Pt. 1 [began Oct. 24th]: Switch from T4 pills to T3 pills. I will need to go off the medication for the RAI, and T3 drains out of the system much faster than T4. End result: I won't have to sit around being hypothyroid (i.e. "feeling gross") as long.

Pt. 2 [begin in a week or two, still under debate]: Start low-iodine diet. My radiation will be combined with iodine in pill form. The thyroid is the only organ in the body that uses iodine - if there's any remaining bits of thyroid tissue in there, it'll latch onto the radioactive iodine, which will glow in the scans. Then the radioactivity will kill off that last bit of thyroid. [edit: this is my best understanding of how it works, but I suspect there may be some incorrect facts in there. I will know more after I go thru with the treatment.]

Pt. 3 [two weeks after starting the diet]: Stop meds. Yiiiiikes.

Pt. 4 [a week after that]: Get a blood test. Wait another few days for results to come back, hopefully saying all levels are where the doctors want them.

Pt. 5: take the pill, get the scan. This I will have to report back on, as I still have plenty of questions.

So, it's looking like I'll have to miss out on Thanksgiving this year, due to being sickly and possibly radioactive. Bummer. But it's not the end of the world, and I'm still stoked for Christmas and a healthy New Year.
I've certainly been having a great time of it this month, what with birthday celebrations and such. Trying to get a bunch of fun in before being housebound for a while.

As mentioned in "Pt.1" above, I did start my new T3 pills. It's been three days, and I think I feel about normal. Extra tired this evening, but I didn't get a lot of sleep last night. I'll try to get a good eight or nine hours tonight and monitor my energy tomorrow. My heart has been a little jumpy, but it's always had phases where it does that, so I'm not too worried yet. The most awkward part about this is that I have to take one and a half pills a day, now. One in the morning, then a half about three hours after lunch. Then I can't eat for an hour after that. My whole afternoon's eating schedule has to be planned now! Crazy!