Things are fine! Fiiiiine!

I realized recently that my last post kindof left things hanging. I feel bad about this, because ultimately I want the feeling around this blog to be one of positivity, and I think the whole "life sucks" then silence routine makes it sound like I'm still having a bad time of it.

But no. Honestly, in this case, no news really is good news. My tests came back clear & great, and I really should post an image of what my full body scan looked like. Kindof eerie and wonderful. But the important thing is, they didn't see anything creepy floating around in there. ("There" being my body.)

Since then, my life's been just like any other random person's. I take my pill every morning, but it's gotten to the point where it's completely routine. I don't really think about it or worry about it, and it happens. Blood tests have come back looking fine. I feel totally great, and have been going to the gym and getting all fit & buff. (Well, we'll see about that.)

My scar is getting better, too. Less red. I think it'll always flare up a little when I'm warm, but it's no biggie. I've never been that concerned about it.

I'm going in for a routine ultrasound check on my neck this Friday morning. I'll try & do better about reporting back about that. I'm maybe a little worried, but I have enough other things on my mind that there's not a lot of room for anything else right now. We'll see what happens, but I'm expecting clear results.

Emotional Weather Report

Here we are, pretty much in the thick of it. Exactly three weeks into my diet, starting my week of treatment, and I've got PMS. Sweet.

The diet is really so unfun, and I've totally been letting myself complain about it. Normally I feel like a jerk if I whine about anything - but I think it's allowed right now, and at any rate there's a point soon at which the diet will be over and all complaining will cease. Because I'll be too busy eating.

The ridiculousness of the situation is that it's a pretty darn healthy diet. It renders me effectively vegan, (tho I also can't eat soy.) But the kicker is that I also can't eat anything that might contain iodized salt. Since it's nearly impossible to tell for certain what contains it, and iodized salt is pretty much the worst thing I could consume right now, I can't eat in restaurants or eat anything that has "salt" anywhere in its ingredients list. This is everything sold in grocery stores. Seriously, I think there's a conspiracy at work by the salt industry. (Ok, not seriously. But why does everything have salt in it?! Crazy.)

Add to this the fact that I suck at meal planning even on a good day, and you may get an idea of the constant frustration I face. I'm fortunate in that I have a fridge full of fresh food, but somehow I never feel quite prepared to cook a tasty meal. I've muddled thru, tho - and this diet has gotten me & JB eating much healthier - we were eating pale overcooked food on a regular basis, now it's sauteed kale and homemade salsa fresca for us. Let's hope this all sticks. I'm sure I said something similar last time, but if this is the worst that life hands me, well, I'm one lucky duck. Forced to cook healthy food at home. Boo hoo. (I will say tho that my digestive system still doesn't approve. Probably because I keep throwing new foods at it. Bland food, bland food, FRESH FOOD FRESH FOOD! omg!)


On to this week's fabulous plans!

It goes a little something like this: Today, injection; tomorrow, injection; Wednesday, blood test and radioactive iodine pill; Thursday, full body scan to see if any thyroid cancer still lurks within me. The doctor has told me not to worry about this. I am worrying about this. How could you not?!
The injections are of Thyrogen - which, long story short, raises my TSH level without me having to go off my meds. Pretty simple procedure - two shots in my hip, two days apart. No side effects as far as I can tell, which is why so many folks love the Thyrogen option. I'm tired and cranky, but hey, that's an average day for me. I did want to point out that the literature the nurse gave me states: "Thyropin alfa (the generic name of the hormone) is synthesized in a genetically modified Chinese hamster ovary cell line." I think this means I have a bit of Chinese hamster in me. They certainly had to be tested on. Sorry, little guys. Truly.

Had to wait a while this morning for my number to be called, but: a) The nurses were all patient and friendly, b) they didn't charge me for the injection, and c) they made an appointment for me tomorrow so I won't have to wait. I do like Kaiser. Wednesday I give them my blood, then I walk over to Nuclear Medicine and swallow another radioactive pill. Less radioactive than last time, so I can go back into work right away. The next day they'll scan me, and then JB & I will spend the rest of the day in San Francisco looking at art. I can't remember how long I have to wait for scan results - I'm expecting sometime early next week I'll hear from the doctor.

I think I can eat delicious restaurant food on Friday. I'm hoping. But I'm also excited about cooking more at home - minus the worry that I'll accidentally eat the wrong thing. Medical drama - what fun!

End of Year Updates

Yeesh, no posts since July? I don't feel particularly guilty as there hasn't been much to report, but I'd like to have a more consistent flow of updates here. Ah well.

Again, no news = good news. Nothing thyroidy going on as far as I can tell. But what brings me here is: I'll be having my second scan next month. This is a similar scan to what I had last November, with a few differences. The one thing that'll be exactly the same: I have to go on the low-iodine diet for two weeks prior to the scan. Joy. I have January 10th marked down as the first day for that. But the main difference from last time: I don't have to go off my meds. That's pretty cool I guess - they'll give me two shots to raise my TSH levels right before the scan. And less radiation than last time. No isolation!

The second scan was mostly an optional deal. My doctor says I show all signs of being cancer-free (I almost typed "scanser") so would probably be fine going on my merry way. Regular blood tests would show if anything was starting to look different in my system. But a scan is more sensitive, and given my past history with second tests proving critical (the second fine needle biopsy is what detected the cancer after the first came back clear) I think I'll feel much better being thorough.

So the last week of January will be full of adventure. Blood tests, shots, radiation pills, scans. At least I'm familiar with the procedures, aside from the shots. Will report back as things happen.




One interesting non-medical development this week: I realized a book I started reading (an awesome book, by the way) was written by the man giving the TED talk in the sidebar there on the right. ("Daniel Gilbert's TED Talk on Happiness.") That talk was immensely helpful to me after my diagnosis: it reaffirmed my belief that we all make the best of our situations, and that even when things seem completely dire we have the innate tendency to feel pretty pleased with things, eventually. Trust me, this is GREAT NEWS to someone newly diagnosed with cancer.

So, yeah, this book is basically the TED talk in longform. The author is a clever writer, and the book is a fun read . Give it a shot if you like sciency facts about humanity. No, it's not a self-help book, but if you're like me maybe just reading about how the brain works is a little therapeutic.


More details to come in an upcoming post, which should happen within a few weeks. It's been lovely to be able to fully enjoy the holidays this year (as opposed to last year, when I was feeling all poopy from worry and such). And I'm told that if this scan comes back clear (as is the expectation) I don't have to have any more! Yes, blood tests into forever, but that's no biggie.

p.s. re. my last post, my scar is still red and hasn't seemed to change at all. Frustrating. But ultimately I'm ok with it. A constant reminder of.... I don't know. Something. Important.

Scarry

Ah, July. This time last year I was going bonkers with worry; so glad that time has passed. I took the day off on May 19th (re. my last post) and had a fantastic time doing wonderful & fun things. I think I'll take July 30th off as well. I doubt I'll make this a yearly tradition (that seems a little morbid), but I'm feeling the desire to mark the one-year point for diagnosis & surgery, and can see no need to deny myself this.

Given the lack of health-based worry in my life right now, there hasn't been much to blog about. To bring things up to date: I did email my surgeon, including a photo of my scar (the same one attached to this post). His response was a little frustrating, given that I was expecting to hear something along the lines of "Yes, it's a bit reddish, but it'll fade with time." Instead of saying that, he first mentioned that the scar looked raised, and that if I wanted I could come in and have them inject a steroid into it to flatten it out. Then he said the redness might be permanent, but the steroid injection might improve that, too.

Thanks, dude. All I wanted was to hear was that it's not so bad, since I happen to not be terribly concerned about it myself, and instead I got new things to be semi-worried about. I choose to remain calm. It really isn't raised much at all, perhaps the photo makes it look worse that it is. And as to the redness, I've never heard of that being permanent, just taking longer to fade. I'm going to continue with the sunscreen, and start using more vitamin E on it. We'll see.

Now I need to get another blood test. I'm actually a month late on doing that - I got a reminder call the other day. Part of my procrastination has to do with trying to get enough vitamin D in my system - I forgot for a while to take those vitamins, and I was worried it would show up as a deficiency in the test. I think I'm sortof feeling tired with the tests at this point, too. Not worried, just not wanting to think about it. Dumb of me, and I have plans to get blood drawn tomorrow or the day after. Interested to see what the results are: I've been better with the vitamin D, and have been taking an extra half-pill of the thyroid supplement once a week.

I feel completely the same as ever, so hooray for that.

Here's the image I emailed:

Looking at this photo again, I can see why the surgeon thought the scar was especially raised. It's not as bad as it looks. Hard to take a good scar portrait!

Onward.

So, had my meeting with the doctor a couple weeks ago, and it went pretty well. We talked TSH and vitamin levels. It turns out he hadn't ordered my Vitamin D levels to be checked during my last blood test because it takes a while for changes to show up. (Tho I feel like a couple months should be long enough...) He says he will have those levels checked next time I get a blood test, in June. As to my TSH, well, it still wasn't low enough, apparently. It's actually just about perfect for most people, but for someone who recently had thyroid cancer they want the levels to be below zero, basically, as this supposedly helps prevent the cancer from returning. But they don't want it too low, because then I'll become hyperthyroid and get all nervous & jittery. His solution: take an extra half-pill once a week and get tested again in June. He warned I might start feeling short-tempered and have trouble sleeping, but no problems yet.

He did think my scar looked redder than it should for how long it's been since my surgery. I have tried to keep in covered in sunscreen, but do admit to not putting any on when the weather's been grey & cloudy. Maybe that's a mistake. But it was starting to make my neck itch. *sigh*.... I definitely didn't go into the sun without protection - it helps to think of your scar as a tiny vampire that needs to be shielded from the light. Pro tip, there. Anyhoo, I don't have an explanation for the redness, and my doctor suggested emailing my surgeon, perhaps attaching a photo for reference. I still need to do that.

Beyond the TSH level & scar redness, my doctor thinks things look great. He said the nicest thing he ever has to me: "As far as I'm concerned, you're done." I show all the signs of someone who has successfully beaten thyroid cancer. Naturally noone can be sure, but he feels any futher worry would be unjustified. I'll see him again in a year and I will need to do the scan again, but not for a while, and I think that'll be my last one. Maybe? My stomach aches are happening less often and the pills are not a worry. I still frown at them occasionally and do feel a bit sad when I refill my pill case weekly, but hey. It's not so bad.

What is a Big Deal is that the first anniversary of my diagnosis is approaching. Kindof feeling creeped out by that. May 19th was when I heard the news over the phone, and that day and moment are forever etched into my brain. Fortunately I have plans to go to a show that night, and I expect to have a great time. But I think I'll still feel weird all day.

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!

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.

Recovery

Not so many posts lately: I've been in a spot where I'm more interested in living my life than writing about it. Things are going very well, but my brain is officially exhausted from worrying about the various stages of this little drama. I'm very pleased to have made it thru the surgery and recovery period so well, but soon I'll get to run another gauntlet: radioactive iodine treatment. Once that's over & done with I'll feel like I can actually relax for a bit.

But the good news is: Yes! I am feeling great. The taking of a pill every morning is still a little strange, but I haven't forgotten yet, nor do I expect to. I was anticipating side effects, and haven't felt any. The big ones to look out for are significant changes in energy levels, hair loss, and weight gain or loss. Nope, nope, and nope. All systems normal. Very pleased. I have a meeting with my endocrinologist on August 31st, and we will discuss how my thyroid hormone levels look, and whether they need any adjusting. I do feel fine, but there may be some tweaking that needs to happen.

I had a follow-up appointment with my surgeon last Thursday (the 13th), and he was quite impressed with how I'm healing. He said he'd forgotten how small the incision was. It's true - the scar is only about 2", and aside from a small raised section which he says will flatten out, it's very unobtrusive. I have a few scarves that I'd been using, but he gave me the all-clear to start applying sunscreen, and given this hot weather we've been having, that's the route I'm taking. I bought Neutrogena's new SPF 100+ sunblock - maybe SPF numbers that high are a scam, but right now, for this purpose I'll buy into it! I also got some vitamin E oil - it took some searching, but I finally found some pure oil (i.e. no added ingredients) and it even came in a little glass bottle with a tiny pump dispenser. My surgeon says there's no harm in using vitamin E oil, but he also pointed out that he has many patients that don't put anything on their scars and still heal up beautifully. What's key is covering it up so that it's not exposed to sunlight.
I don't have a current photo of my scar, but here's how things looked before the bandage came off last week:















The most entertaining part of my follow-up appointment was the check-up on my vocal chords. I still have some hoarseness, and I can't project in crowded/ loud situations. I've noticed consistent improvement over the last few weeks, but I still have a ways to go. To check things out, the surgeon took a scope - about a foot long, and bendy - and inserted it into my nose and down my throat. Yup. Wasn't expecting that, but it wasn't really so bad. He applied a nasal spray that somewhat numbed the area, then went to town with the scope. He was very careful with it, but it still felt pretty bizarre. Once it was inserted he had me say "eeeee" a few times and said my left vocal chord was looking weak. He pulled out the scope (slowly) and as I was wiping my watery eyes he said he wanted me to come back again in a few weeks so he could keep track of my progress. He'll be using the scope again. Fun!

I'm starting in on my second week back at work - my first week back was a little tougher than I was expecting, but I think I'm back in fighting form now. It really was wonderful to be able to spend that week after surgery just sitting around and healing. We went for a drive midway thru the week to the Marin Headlands and to Stinson Beach, and it was glorious. I was super tired the next day (even tho I barely did anything but walk around a little bit) but it was wonderful to be able to get some sunshine and enjoy some gorgeous scenery so soon after having surgery. I'm a pretty lucky gal.

Life's pretty sweet.

A week and a couple of days post-surgery, and I'm feeling good. This is honestly a surprise, as I was expecting all sorts of random things to go wrong and/or side effects from the meds. This is how my mind usually works (preparing for the worst), but it does seem like with an operation this delicate there was plenty of room for error - hooray, things going right!

As I mentioned in my last post, things took a while to get back to normal after being under the anesthesia for so long - my surgery began at 9am, and I woke up at 1pm. When I woke up in the recovery room, I could barely breathe - my first foggy memory is of desperately trying to inhale while my lungs dealt with the unexpected fact that they were full of fluid. Well, "full" is likely an exaggeration, but I couldn't breathe, dammit. The nurse taking care of me - a wonderful woman named Cecelia, told me matter-of-factly that I had stopped breathing for a bit and they had had to do some sort of emergency procedure to get me going again. I'm still unclear as to when exactly this dramatic event took place, and am looking forward to getting a little more info. I could barely talk when I woke up (and for the next few days), so asking questions wasn't really much of an option. After I was awake and it was obvious I was still struggling, Cecelia injected me (via my i.v.) with something called Lasix, which basically took all the extra fluid buildup and moved it to my bladder so I could pee it out. I felt better right away. Crazy and magical.

The surgery itsself was a major success - I am SUCH A FAN of my surgeon! Seriously, if you know anyone who has to have their thyroid out, and is covered by Kaiser, talk to me. I've got your man. He's super talented, laid back, and an all-around nice guy. Most importantly, he does this sort of operation all the time (about a dozen a month), so he's got the skills - meaning he was able to save my vocal chords & my parathyroid glands. High-five.

They kept me overnight in a room with two other people. Apologies all 'round for not getting me my own room, but apparently it was a busy day for surgeries, and they were all full up. I got the bed nearest the window, so that was a coup of sorts. The other two women in my room were recipients of new knees (one each, I believe), and so were entirely bedridden during their stay. I was transferred to the room at around 4pm, and by 6ish I was able to hobble around a bit - did the classic slow stroll down the hospital corridor. At least it was sparsely populated, and I had JB's arm to lean upon - and it was on the 7th floor, alongside a bank of windows facing North over Oakland, Berkeley, and the hills, so there was a decent view.

When Cecelia first wheeled me into the room my stomach did some flip flops and I puked - thankfully in the bathroom. Puked once more later in the evening, but besides that I held it together pretty well. Didn't eat anything 'til the next day, and avoided Vicoden, as I heard that makes you extra-nauseous. My main issue was with swallowing and breathing - I definitely felt like that breathing tube had been shoved down my throat rather viciously. The surgeon & his team popped in later in the evening, and pronounced the procedure a success. They had to take out the entire thyroid (bummer) but the cancer seemed to have been isolated within the nodule - they hadn't needed to take out any lymph nodes (awesome!) No-one seemed worried about my throat or lungs, so I decided I didn't need to be, either. It just kindof sucked.

The lady in the bed farthest from me was ancient (I peeked over at her a couple of times on my way to the bathroom) - probably in her 90's, but pretty lucid. Her daughter was there much of the time. The woman nearest me was a self-described cat lady, probably in her 60's. We never spoke directly, but she had a way of verbally grabbing hold of every nurse that walked by - she was a complainer, and felt pretty sorry for herself. Nothing wrong with that after having your knee replaced, but dear lord, she would go on & on. And when she made a couple of phone calls it became clear that she was a shouter (not in anger, just.... shouting across those telephone wires.) Gah, I'm still annoyed at that woman.

All thru the night nurses were coming & going, and even with earplugs & an eyeshade I only got about four hours of sleep. I was pretty excited about leaving the next morning. It was generally a smooth process, and I was at JB's by around 10am. I basically slept for the rest of the day - it felt so good to have some peace & quiet!

More on my recovery later.

Here's a fascinatingly artistic shot of my hands pre-surgery. Got an i.v. in me.

Quick-Change

Well. Kaiser called Wednesday and told me the surgery was on for Thursday the 30th again. I didn't have time to update anything here, as I was too busy freaking out and rushing around taking care of things last-minute, something I had really hoped to avoid. The freaking out part was mostly because the communication with Kaiser was so lousy - the surgeon's assistant called at 10:30am and told me I could have the surgery "tomorrow" after all. I asked if I could keep the August 5th date. She said yes. I said I needed to think about it, and she seemed a little annoyed at that. I agonized over the decision, and ultimately decided to wait 'til August 5th to have the surgery. When I called her back an hour later we had an aggravating conversation where it came out that I essentially had no choice after all, and would need to come in the next day, at 6:30am.

So.... it's happened - I had the surgery. I have plenty to write about that experience, but for now long story short, they seem to have done a great job in preserving my parathyroid glands and my vocal chord nerves. The whole thyroid came out, but they say the cancer was isolated in "the capsule" in the nodule, and they didn't need to remove any lymph nodes. I have a follow-up with the surgeon in two weeks and I'll ask more questions then re. follow-up care.

The big issue has been with recovering from general anesthesia. This was my first experience with it, and it kicked my ass. The tube that went down my throat is now making it really tough to swallow, and I am having some lung/breathing issues. (I woke up with fluid in my lungs, pretty gross and horrible. They fixed the majority of the issue pretty quickly, but there's some stuff in there still and it hurts too much to cough it up.) I can't talk very well, but that will apparently be a short-lived issue.

They kept me overnight Thursday, and now I'm at my boyfriend's house, recovering. Very achy, but making do with Tylenol. They prescribed Vicodin, but I don't want to take it as I'm already nauseous and don't want to make things worse in that department.

I've been sleeping a lot today and looking forward to feeling better. Once that happens I'll write more about the surgery day.

Endotracheal tube:

Postponement

Well..... I got a call from my surgeon's office today: they need to postpone my surgery due to "an issue in the operating room." I guess some equipment might not be working? Or maybe they're moving things around? (Kaiser is in the process of moving to a building across the street, I don't know if my designated OR is part of that move.) Regardless, I am now scheduled to have surgery a week from now, on Wednesday, August 5th. I'm told I'll be the first operation of the day - hooray! That's actually a good thing - I'm hoping my surgeon will be nice and rested and ready to operate - better than being scheduled at the end of the day! And it increases my odds of being able to leave that day, and not having to stay overnight.

The woman who called me today, my surgeon's assistant, apologized repeatedly - apparently they (my surgeon and his office) got next to no notice about this situation, and are left scrambling around trying to rearrange operations - not a fun series of calls for her to make.

So, yes, no surgery for me this week. Next Wednesday is the day! Another week of freedom, another week with my thyroid! My thyroid & I may go hiking this weekend to celebrate. It is frustrating to have to wait, but I think it'll work out for the best.

Pre-Surgery Meeting

So, yesterday I had a pre-surgery meeting at Kaiser. I have to give very huge thanks to JB for being awesome and coming with me; it made the experience almost entertaining.

We got there at 8:45 in the a.m., and the morning progressed like this: Check in with clerk, sit in waiting room, wait, fill out paperwork, wait, meet with anesthesiologist, waiting room, meet with registered nurse, waiting room, meet with another nurse, waiting room, meet with admitting clerk/nurse, pay for surgery, finally leave. The whole process took two hours, but we had been warned to expect this, so it wasn't a big issue. And the wait times between meetings weren't too bad. We got to see the same faces several times in the waiting room, as people who arrived at around the same time we did were cycled thru the system. Everyone had a buddy with them, tho some buddies stayed in the waiting room. Most folks were middle aged to elderly, tho there were one or two on the younger side. No one seemed freaked out, and it was kindof amazing to think "We're all here because we're going to get operated on soon." Oh, delicate bodies.

I think nearly every major ethnicity was represented in the nurses and clerks I talked to; that was kindof cool. Also nearly every personality type, which was less cool, but thankfully I got most of my questions answered.

The anesthesiologist was an older man, who definitely had an air of "I've done this a million times before." He explained the basics: no food after midnight the day before the surgery, the anesthesia will be delivered in such-and-such a way, you might feel pukey for days afterwards so stock up on Jello, etc. He told me to stop taking my herbal supplements. I got a pamphlet that is full of happy looking people being put to sleep. So to speak.
He told me all I needed to know I guess, tho I would have liked him to be a bit warmer in his delivery. I understand he has to give this information dozens of times a day, but there's a pretty big disconnect between his boredom and what I can only assume is most patients' anxiety.

Next up was the registered nurse, who was maybe clinically o.c.d. - she delivered all her info rapid-fire, while straightening her pens over & over. Her job was to tell us how the day would go, where we needed to be, and what we needed to do. This is when I found out that I might be discharged same-day. My surgeon had said he wanted to keep me overnight, but my paperwork says I will be outpatient. This was an issue all morning - the confusion over my one-versus-two-day stay. I think it will be straightened out that day - I was told so; if I am struggling and feeling terrible, they will keep me overnight. I want to be out of there asap, but I also don't want to go home if I feel like utter crap.

The other nurse took my vital signs and asked questions about my medical history. Not sure why, as all this should be on record, but whatever. She was a pretty cool lady - much calmer and more personable than the other two folks, but I only saw her briefly. She listened to my heart and breathing, and let me go.

The last person we saw was a grim woman who basically just typed up all the information I'd written down, while we waited and JB's stomach growled.

It all served to make the surgery feel pretty inevitable, which I think is a good thing. I had been worrying recently about not getting another biopsy, and the possibility of it not being cancer and having to lose my thyroid for nothing. But JB made a great point, saying that even if it weren't cancer now (tho it probably is), it could turn cancerous later, when it's harder to treat effectively. Plus, and this comes from me not him, tho we both know it's true, I am a total worrywart, so I will always look at the lump on my neck and wonder. I was wondering even before my diagnosis, and it certainly wouldn't become less of an issue after this experience.

So, yes, it sucks but it looks like surgery is for the best. I think it'll go well, and I think, hope, that I'll recover well and adapt well to the pill-taking.

We shall see. One week from today.

In happier news, we went to the Alameda County Fair last Saturday and had an amaaaazing time. I can't wait to go next year! I wanted to post video, but Blogger was being slow. (Actually, it's probably my internet connection.) Maybe tomorrow. Soon!

Two Weeks.

Well, two weeks from today is the big day. I mentioned it pretty quickly in an earlier post, but my surgery date is Thursday July 30th. They haven't scheduled the actual time of day yet, apparently. I have a pre-surgery meeting on the 22nd, perhaps they'll reveal it then....? I need to ask some pre-pre-surgery questions.

For the most part I'm operating (heh) on a low-level amount of stress at this point, just sortof waiting for the day to get here. I freaked out a little yesterday evening, when I was at Big Longs buying two of those weekly pill boxes (you know, they have a little box for every day of the week.) It really hit me then: I'll be taking pills for the rest of my life. I know, I know, I'm a giant baby about it - lots of people have lots of problems that are so much worse than mine. But still - two months ago life was easy street, and in two weeks I'll be without a vital organ. Assuming all goes as planned, I expect to recover pretty quickly and be back at work in a week or so (semi-part-time, maybe.) But it's just so weird to feel that I have all my parts right now, and two weeks from today there's no going back: I'm tied to the medical establishment forever. I can't even hold on to my long cherished wish to time-travel. (This is a far more crushing realization than you can probably fathom.)

But these are ultimately the complaints of a privileged person. If I take the time to think, I realize that this is just the way my life was always going to go, and down the line I'll look back and think "Yeah, that happened" but will probably not miss the old me so very much. Tho even typing that made me start to tear up, because I don't want to say goodbye to this me, now. It's not the old me yet, it's just "me" - and I wish this didn't have to happen.

This time next year I'm expecting to be in a much better place, damn it.