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!

Onward & Upward

Finally, finally, here's a photo of my scar! I am so pleased with how it looks - even tho it's fun to joke that I wish it looked a little more badass. It's perfect, as far as scars go - small & neat & symmetrical. I'm told it'll disappear pretty much completely in a couple of years, but I honestly wouldn't mind if it stayed the way it is.

It's been nearly a month since my last update, and in that time I've had my first post-surgery meeting with my endocrinologist (the doctor who is overseeing my hormone levels) and a second, final follow-up with my surgeon.
All the results I've gotten and the discussions I've had this month have been positive (and occasionally downright excellent) - still such a pleasant surprise, every time.


A brief list of facts & info from my endocrinologist visit:

- My thyroid hormone levels are looking great. I'm taking the pill every morning without fail, and apparently my guts are absorbing it well. My doctor is considering making me a little more "hyper", which he thinks can be achieved by my taking an extra half-pill one morning a week. But we're going to hold off on that for now due to the fact that:

- I will probably be doing the radioactive iodine (RAI) therapy in November. I chose the time period because my birthday is in October (as is Halloween) and I'd like to be able to enjoy the month without worrying about all the small but real annoyances of the treatment. If I do it in November I might have to feel crappy thru Thanksgiving, but I will be perfectly fine by Christmas and can therefor welcome (gratefully) the new year having dealt with all my medical issues for the foreseeable future.

- Regardless, it seems that all of the cancer has been removed. My blood test shows no "markers" and while the nodule was sizable (4 centimeters) the cancer was comparatively quite small, and they tell me it was very contained (i.e. didn't look like it was trying to spread from its small spot in the nodule.) The RAI therapy is optional, but is recommended as it's seen as a safeguard against recurrence (which is somewhat common in this type of cancer.) This is another tough decision for me, since even tho the radiation levels will be smallish it's still, you know, radiation, and regardless of whether or not I get the treatment the cancer may never appear again, or it might pop up in ten or twenty years. It's not as crazy-making a choice as surgery was (thank god) - I already think it's probably for the best and will probably go thru with it. Plans have already been made for the RAI, in fact - I am just trying to decide whether I should cancel them or not.


My follow-up with my surgeon went pretty smoothly. My voice is finally improving to the point where I can converse in crowded spaces and can even almost shout a bit! It's a little rough around the edges still, but I'm expecting further improvements, and my surgeon seems to agree. I didn't get a scope up my nose this time - they were in short supply that day, apparently. Instead, my surgeon grabbed my tongue, put a mirror in the back of my mouth, and had me [try to] say "eeeee!" Fun times. He said it looked better in there, at any rate, so it was worth the awkwardness.

So, I'm pretty much just coasting along at this point. It's been an entertaining month - I'm enjoying all sorts of Bay Area activities: A trip to the Academy of Sciences planetarium for a lecture on the Voyager program, Taco Tuesday on Lake Merritt, celebrating a friend's birthday at the Oakland Coliseum (the A's won and there were fireworks after the game!), seeing "The Third Man" at the Castro Theatre..... so much fun in one month, and it's not over yet!

While my life has changed irrevocably since my diagnosis in May, it's a giant relief to know that it carries on, and that even scary things can have relatively happy endings. It's not over yet, but I'm still feeling good about all of this.

Inaugural Blood Test

Had my first post-surgery blood test today, in preparation for my first post-surgery meeting with my endocrinologist this coming Monday. Hard to believe it hasn't even been a month since I had the surgery. Well..... I guess I believe it. Everything still feels a bit new. I'm always worried I'll forget my pill, but it hasn't happened. I'm pretty good at remembering those sorts of things, but I'm also pretty good at worrying needlessly.

I dropped by Kaiser Oakland's lab this morning. The phlebotomist I got was a little odd. He kept asking if I was ready. "Are you ready? Are you sure?" I didn't feel stressed, and I really don't think I looked stressed - getting blood drawn is no big deal (for me.) But he did seem concerned. "Ok.... if you're sure you're ready...." Finally I asked "Are you ready?" To which he said "I'm ready if you're ready." I was ready.
After all that I was afraid he'd stab me in the wrong spot or something, but things went smoothly enough. Now I just get to wait for the results (they should email me a link) and then I get to have the fun fun meeting with my doctor.

Still no real side effects to complain about. A couple of small things that may or may not be related, and which I will discuss with my doctor, but I feel mostly the same. I went for a brief jog around the neighborhood yesterday, for the first time since just before the surgery. I felt soooo out of shape and it definitely seemed like I was dragging along. Do I blame my absentee thyroid, or do I blame the fact that I haven't exercised in a month, haven't been eating all that well, and I was just generally tired after work? I think I'll go with that.

Tomorrow, more exercise. Tonight I go to a friend's house and watch "Withnail & I"! Definitely looking forward to that.