8/24/2010

News.

Dear reader(s),

PET results were negative. That doesn't mean there's no metastasis or no cancer, just that there's nothing big or non-papillary floating around. Two current possibilities as discussed by myself and my endocrinologist are that my TG results in the blood test were wrong or that the cancer that IS hanging around is too tiny to see with a diagnostic RAI, in which case it might get picked up when we do the higher treatment dose.

Current plan is to start RAI as soon as possible. My endo isn't sure whether she wants to give me a lower dose (150 mCi) since we don't know what's going on, or a higher one (200 mCi) that could possibly cause more long-term damage, especially to my salivary glands, but would obviously have a better chance of knocking out the disease. I'm going to deliberate with my family on that tonight, talk to her tomorrow, and probably start treatment on Thursday as long as they can schedule me in. If they give me the higher dose I could possibly be isolated for 11 days instead of 7. You can imagine how thrilled I am about that.

We're also considering - as I think I mentioned before - getting another doctor's opinion given the weird mysteriousness of my case. Actually having a sit-down appointment with another doctor could take weeks, though, and I'd have to go back on my meds and then off of them again to do treatment after that. I'm supposed to start grad school in two weeks, so that wouldn't really be a good option. On the other hand...I would like to be cautious about all this. And having a reprieve from my personal hell is obviously an attractive idea.

Anyway, that's the situation. News will be given as decisions are made. And whenever I do RAI, my faithful reader(s) will obviously get to follow along on my radioactive and probably very boring adventures. So stay tuned.

Love,
RG

Hypo-insomnia.

Dear reader(s):

Normally I try to use this blog to inform rather than to complain, but right now I feel like complaining a bit, and this is, after all, my blog to do with as I feel. So if you're not interested in the non-factual, feel free to skip this one. My feelings won't be hurt. Actually, I probably won't ever know.

I've listed before what the "official" side effects of hypothyroidism are and what some of mine are specifically. However, being hypo affects everyone differently, and as one descends further and further into hypo-hell issues arise and/or intensify. I have now been hypo longer than I've ever been (I think), and while I've held myself together pretty well thus far I think I'm starting to crack a bit.

The reason I'm still awake, reader(s), is because I'm afraid to fall asleep. I am literally tired pretty much all the time now, and I know I need to rest. But at this point, sleeping has become less like normal sleeping than like falling into a semi-coma. It scares me. I sleep for approximately ten to twelve hours and it's hard for me to wake back up. Once I do wake up, it's hard for me to actually physically get out of bed. Once I'm out of bed, it takes such a long time for me to feel like an actual normal person with semi-reliable brain function that I really don't get very many hours during the day where I can function on a level that resembles anything close to my normal, non-hypo self.

While I can admit that I am often a somewhat lazy person when left to my own devices, I do not like living this way. I'm used to being a) intelligent and b) independent, and right now I feel like a zombie who can barely muster up the energy to actually get anything done on my own. I can barely even read. Anyone who knows me at all knows that I LOVE to read. When I'm hypo, though, my vision is blurry and the words often pulse in and out when I try to focus on them. That includes the words on my computer screen, and it includes the times I write in this blog. There! It just freaking happened! I hate that!

I want my brain back and my life back and my job(s) back and myself back. And I fucking want junk food back! I don't know how much longer I can take this anymore. Even though don't want the PET scan to find weird cancer in weird places in my body because that would be horrible and scary, I also know that the alternative is to keep living like this for another week or two and just thinking about that makes me want to scream.

I am aware of how irrationally short-sighted and crazy that actually sounds. But...well, like I said, me - meds = lack of brain function. So it is what it is.

Anyway. That's the big rant. I apologize if anyone actually read it. I suppose it's coma-time for me now. PET results, as promised, sometime tomorrow (today?).

Psychotically yours,
RG

8/23/2010

Done with PET

Dear reader(s):

PET scan is done. Was pretty easy. At this point I'm so used to being injected with things and stuck in giant circular devices that it really doesn't phase me anymore. I think sometimes I actually freak the radiology people out with my college t-shirts and nonchalant attitude. "Yeah, I'm 22 and you're putting me inside a huge camera. What else is new?"

I'm just glad that this is the last test for awhile and we're finally about to get some answers.

 Although there's nothing about my images that needs analysis by anyone except my endo (as opposed to biopsies, ultrasounds, or RAI scans which need to be interpreted by a special radiologist), hospital bureaucracy is such that there will probably be no news til tomorrow. Possibly late today at the earliest. So sit tight reader(s). As always, you'll know what I know once I know it.

Knocking on wooden things,
RG

8/22/2010

PET prep.

Dear reader(s):

Sorry for the updating delay. My boyfriend has been here in town with me for the past few days so I've been running him around trying to show him all the fun things my hometown has to offer. Who knew that could take up three whole days?

Anyway, we found out on Friday morning that the RAI scan didn't show any uptake anywhere. So now I have a PET scan scheduled for tomorrow morning. The good news is that after the PET, no matter what happens, we'll be able to set up a plan of action. If nothing shows up, we go ahead with the RAI treatment dose as initially planned and I guess hope that my TG level was a fluke. If something does show up, then we...deal with whatever it is however is best.

What exactly is a PET scan, you ask? I'm not quite sure how well I understand it still, but I know it involves me being injected with some sort of sugar solution which may or may not contain some sort of radioactive isotope - no, not radioiodine - and then waiting for about 45 minutes for it to uptake in my blood before they scan me in a Positron Emission Tomography scanner. The actual scan used to measure blood flow, oxygen, and metabolism. When combined with the imaging technology of a CT, as it commonly is, it is extremely effective at detecting microscopic cancer mets. So if there's cancer hanging around anywhere in my body, the PET/CT scan will find it.

Tonight I have to eat a dinner that's high in protein and carbs and avoids sugars (for the sugar solution, obviously), and then nothing but water til after the scan tomorrow. Like I need any more dietary restrictions, right? *Sigh*

On a related note, yes I am still on my diet and off my meds. Obviously if the PET is negative and we go ahead with I-131 treatment I need to still be hypo and iodine free for that, so...the fun continues.I have pretty much accepted the fact that I will never eat normal food or feel like a normal human ever again. The funeral for my tastebuds and various brain cells will be next Wednesday, I hope you can all make it.

Although I've been happy with my endocrinologist thus far, my parents and I are considering getting a second opinion about all this. Especially if the PET scan does show any weirdness.  Sometimes it just helps to get a fresh perspective on an issue. Plus I'm thinking that since my case is pretty rare and unusual at this point it would benefit me to be seeing doctors who are more accustomed to such cases than my local endocrinologist - however good she is - would be. We've been looking at the endocrinology experts up at Mayo Clinic in Rochester and have heard good things, so I might be taking a trip up Minnesota way sometime soon. Plus I'll get to hang out at Mayo like a real cancer patient and earn me some cancer street cred. Respect, beeyotches.

Waiting is almost over, everyone. Look out for answers coming tomorrow or Tuesday - I'll try to update this as soon as possible but I also have to contact my various places of employment and a few specific people that I've promised to personally inform. Keep your eyes peeled and your brains ready to be crammed full of more medical jargon than you ever really wanted to know. RG-style.

Ready to be PETted,
RG

8/16/2010

Walking the walk!

Dear reader(s),

Well, Radioactive Girl is now officially radioactive. Not nearly as radioactive as we had initially planned, but at least the blog title now applies to my actual life. Hooray!

No superpowers yet. But they only gave me about 5 millicuries (mCi) of I-131 this time, so I think the best I can hope for on that front is the super-ability to grow my fingernails 10% faster than before. Never fear, reader(s), I'm sure the flying and mind-reading are yet to come.

I'm going to explain what's going on with this one more time, a little more carefully, because it is a bit confusing.

The initial plan for last week and this week was for me to get a treatment dose of radioactive iodine (I-131). That would have been around 175 mCi - enough to ablate any leftover thyroid cancer cells in my body and thus treat said cancer. But, after my weird ultrasound and TG levels my endocrinologist thinks my cancer is hanging out at some undisclosed location in my body, rather than just my neck, so instead of going in blind with the RAI treatment she decided to do a diagnostic dose (the aforementioned 5 mCi of I-131) instead.

The reason this is confusing is that I-131 is used both to detect and to treat thyroid cancer. I probably should have just said that somewhere before. Sorry, reader(s). Because thyroid cells take up iodine so consistently doctors can use I-131 to blow them up AND to give smaller doses to trace where they are in the body. As you will remember from my explanation of TG levels, for my purposes thyroid tissue = thyroid cancer, so all they have to do to find my cancer is give me a little tracer dose of RAI and then scan me a few days later to see where the I-131 shows up in my body. Which is exactly the process we began today.

This "scan dose" situation is pretty common, and even when/if they finish treating my actual cancer I will have to have it done every year or so for the next 3-5 years to make sure my cancer doesn't recur. Right now, that 3-5 years seems like it will never come. But I'm still hoping that one glorious day I will never have to do any of this stupid crap ever again. *le sigh*

Now I spend the next three days avoiding fun, food, and friends as I wait for the iodine to uptake. Scan is on Thursday morning, and hopefully by late Thursday or early Friday we'll have some idea of what's actually going on. Boyfriend gets into town on Wednesday, so at least that's something to look forward to. Keep checking, 'cause I'll probably be bored enough to keep posting.

Living up to my name,
RG

8/15/2010

My love glows bright neon green...

Dear reader(s):

I believe Radioactive Girl has just found her soulmate.

(The best part is that it's from the Simpsons.)


I just hope I'm his iso-type. ;-)

In love,
RG

Low Interest in Dining

Dear Reader(s):

Yes, that was the best acronym I could come up with.

No news to report today. However, since the point of this blog was to impart information to you, the reader(s), about all things thyroid cancer-y, I've been trying to think about related things to talk about here. We already went over TSH and TG levels, so that's covered. I did realize, though, that I promised awhile back to talk more about my Low-Iodine Diet, and this seems as good a time as any.

Note: I will be using the abbreviation LID to refer to the diet hereafter. Aren't you just loving all the acronyms? It's so super fun!! Itz just lyke txt-spk, rite?? OMGLOLZ. :))) <3 <3

Whoa! Sorry! Grammar-challenged preteen got loose there for a second. My bad. Won't happen again.

Anyway. The two main questions I get about the LID tend to go as follows. The first is, essentially, "What can't you eat?", immediately followed by, "Wow. So what CAN you eat?". I will, therefore, explain both.

The essential function of the diet, which I assume my reader(s) understand(s) at this point, is to help starve the body of iodine before radioactive iodine ablation.The diet is, as we thyca-ers must often clarify, LOW iodine rather than NO iodine. At first this sounds nice. "Oh! So I really don't have to be all that careful!"

Wrong.

Most LIDs have patients try to reduce iodine consumption to less than 50 mcg per day, although some say 80-100 mcg. The recommended daily allowance for normal adults is 150 mcg. Again, this doesn't sound so bad...until you find out that one teaspoon of iodized salt contains 400 mcg of iodine. And thus we see: failure is not an option here.

The major categories of foods to avoid on the diet are iodized salt, dairy, soy, and seafood. Some of these categories have some wiggle room, while others do not. For example, Kosher or non-iodized salt is fine (and my container of kosher salt is pretty much my best friend in the whole world right now), but sea salt is not. All forms of soy are bad except for soybean oil, which for some reason is allowed. Dairy and seafood are never allowed. Some common protests I get are, "But seafood has no salt in it!" and "But sea salt is non-iodized!" Sorry. Sea-based products are high in iodine. That is a direct quote directly from the guidelines. I didn't make the rules, kids, I'm just forced to obey them.

In fact sea salt, along with soy, is the bane of my existence, because all those yuppie organic places like Whole Foods LOVE THE CRAP OUT OF THEM and put them in EVERYTHING. Even kosher foods have a ton of soy in them. I hate you, soy and sea salt. But I still love dairy. Even though dairy has also ruined many foods for me, I can never truly be mad at it. I love you, dairy! I miss you so much! Please call me, baby, I know we can work this out if you just give me one more chance!

Ahem. I digress again.

Here are some of the things I can and do eat:

             - Fresh fruits and veggies. My favorites are baby carrots, strawberries, apples, and bananas.
             - Unsalted nuts. Sometimes expensive or not-so-expensive depending on where you buy them. I like  almonds and pecans. I found a farmer's market in downtown Chicago that was selling a mix of cranberries, cherries, and pecans mixed with sunflower oil and some sugar. So tasty. Thank you, nice farmer man from Michigan.
              - Chicken and beef, but I have to go to the butcher's section in the store and ask if they have any that is not preserved with salt. This can be tricky. For example, the Whole Foods in my hometown told me they had no such meats, whereas the one in Chicago told me none of their meats had any preservatives added. Why the difference, I cannot possibly say. *LE SIGH*.
              -  Coconut milk. This was a glorious find that I just discovered on my third time doing the LID. I had previously tried soy, rice, and almond milk and none are okay on the diet. Coconut milk, however, has no soy, dairy, or salt anywhere in it. I have always enjoyed coconut despite its many naysayers, and now my devotion has paid off. I love you, coconut, in all your many forms.
              - Pasta, rice, and homemade bread. Pasta noodles I boil and add salt-free tomato sauce and/or paste to - both are easy to find in most grocery stores - with some seasoning. Quick, easy, tastes like normal food. For rice the diet guidelines suggest basmati rice, which I buy in convenient packets that you can stick in the microwave for 90 seconds and voila! Side dish! Bread must be in the form of matzoh crackers or salt-free corn tortillas (thank you, mexican-owned grocery store near my apartment) unless I have access to my mother's bread maker. Then we go crazy making all sorts of breads with kosher salt, including, most recently, foccacia bread and banana bread. Delicioso.
              - Also recently discovered that both marshmallows and gummy bears are LID-safe. So much for eating healthy!
              - Lately I've been looking into easy-to-make Kosher versions of foods, based on the assumption that for a food to be given an official Kosher label it would probably have to contain Kosher salt instead of regular salt. However, I am not 100% sure this is the case. Perhaps some Jewish friends (Phil and Theresa, if you're reading this?) could clarify.

Those are the main things. Basically, I go to every variety of grocery store in the area and read all the labels on everything to find things I can eat. Sometimes, I get lucky - like when I found out the dough at the pizza place I work at is made with kosher salt. Score! But most of the time I am simply disappointed with my meager food choices and spiral into deep, deep depression at mealtimes. C'est la diet.

The awesome-tastic super-amazing people at thyca.org have a 120-page cookbook full of recipes that are LID safe. We thyca patients all really, really, really, really hate the LID, and it is common for us to impart tips and recipes between us. Welcome to cancer culture, everyone. Thyca.org is awesome - so awesome, in fact, that my doctor actually uses their guidelines to explain the LID to patients.

One more clarification that I left out before: iodine is not sodium. People often get them confused because they are both commonly found in salt. Just because you can make a fruit salad with them does not mean that apples are oranges. Apples = apples, oranges = oranges. Iodine BAD, Sodium FINE. At least for the LID. I obviously can't speak for the dietary restrictions of others.

So, there you have it! A fun-filled trip into the world of the LID. Also a shout-out to my new blog-friend Nick, who is just starting his weeks of dietary joy. Welcome to the jungle, we have no fun or games. Sorry.

For more info please check out thyca.org. They have great explanations of the diet, as well as the aforementioned cookbook and lots of other thyroid cancer stuff. And also they are smarter than me, which is helpful for actually making people understand things.

Your iodine-reduced friend,
RG