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: