Dear reader(s):
I JUST ATE CHOCOLATE.
I have achieved religious enlightenment. Please refer to me as "the Bodhisattva" from now on. Thank you.
In Nirvana,
RG
8/25/2010
Chi-town or Bust
Dear reader(s),
After much deliberation between my parents, my endo, and I yesterday, we have agreed that I'm going to see another specialist before we go ahead with the RAI. My case has been so weird that it seems like a good idea to get a second opinion, especially considering that at this point we're essentially fighting something we can't see. At all.
The awesome part of this is that setting up an appointment somewhere else will probably take a few weeks, so until then I get to go home! And off the diet! And take Cytomel! Obviously I am quite thrilled about all of that. I know I'll have to do all of this again in a few weeks anyway, but I just need a freakin' break. After a whole month I feel like I'm going to lose my mind if I have to live this way any longer.
So now at least I have a little bit of time to live my life before we finalize the RAI plans. And I think we'll all feel better about it once we've talked to an expert. Or...another expert. I don't want to badmouth my endo because she's great. It's just that her practice doesn't specialize in thyroid cancer, and we want to go to a hospital that does. She seems to agree that that's the best plan as well.
I'm now about to take my pill and have a small bit of dairy product. Wish my intestines luck as they attempt to process iodine again!
Happily reprieved,
RG
After much deliberation between my parents, my endo, and I yesterday, we have agreed that I'm going to see another specialist before we go ahead with the RAI. My case has been so weird that it seems like a good idea to get a second opinion, especially considering that at this point we're essentially fighting something we can't see. At all.
The awesome part of this is that setting up an appointment somewhere else will probably take a few weeks, so until then I get to go home! And off the diet! And take Cytomel! Obviously I am quite thrilled about all of that. I know I'll have to do all of this again in a few weeks anyway, but I just need a freakin' break. After a whole month I feel like I'm going to lose my mind if I have to live this way any longer.
So now at least I have a little bit of time to live my life before we finalize the RAI plans. And I think we'll all feel better about it once we've talked to an expert. Or...another expert. I don't want to badmouth my endo because she's great. It's just that her practice doesn't specialize in thyroid cancer, and we want to go to a hospital that does. She seems to agree that that's the best plan as well.
I'm now about to take my pill and have a small bit of dairy product. Wish my intestines luck as they attempt to process iodine again!
Happily reprieved,
RG
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
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
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
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
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
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.
I just hope I'm his iso-type. ;-)
In love,
RG
I believe Radioactive Girl has just found her soulmate.
 | |||
| (The best part is that it's from the Simpsons.) |
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
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
8/14/2010
Spooky.
Dear reader(s):
It has just now come to my attention that yesterday was Friday the 13th.
...O.O
Coincidence?
Love,
RG.
It has just now come to my attention that yesterday was Friday the 13th.
...O.O
Coincidence?
Love,
RG.
Um...well, this is awkward.
Dear reader(s):
Yesterday was the weirdest possible kind of day. The kind where your specialist's assistant calls you at 1 pm with good news, and then your specialist calls you four hours later with bad news. That's right, folks: the Cancer Rollercoaster is moving full speed ahead, with more twists and turns than you ever wanted or thought possible.
AND THE BLOG GETS INTERESTING ONCE AGAIN. WOOHOO!
Here's the deal. I explained TSH yesterday, but I did not explain TG. Thyroglobulin - TG - is basically an indicator of thyroid tissue in the body. In my case, thyroid tissue = cancer. So higher TG = more cancer. We want my TG level to be 0. I had, as you may remember, a blood test on Tuesday, and since Wednesday I had been asking my endo's assistants if they had my TG results in. Apparently they did not get them until late yesterday, when my endo herself finally called me to tell me that my TG is at 45.
Again, ideal level is 0. My TG before my last surgery was 18. This means that my cancer is still growing even AFTER that surgery, and since my surgeon pretty much cleared my neck out back in April it's likely at this point that there's thyroid cancer hanging out somewhere in my body. The bad news is my doctor has no idea where.
I would like to clarify for everyone - before you get too freaked out - that if thyroid cancer is found elsewhere in my body it is still thyroid cancer, not another kind. For example, if they find it near my lungs it is still metastatic (metastatic basically just means it moved) thyroid cancer, NOT lung cancer. This means that it could still respond to radioactive iodine. The bad side of this, as explained by my endo, is that it is possible for my papillary thyroid cancer to have re-differentiated into a different type of thyroid cancer. There are four types - papillary is the "best", the next two are meh, and one is really really scary and awful. But right now we're going to pretend that one doesn't exist, k?
What's happening now: I will go to the nuclear medicine place on Monday. They will give me a scan dose - as opposed to the previously scheduled treatment dose - of radioactive iodine. The difference between the two is that the treatment dose is intended to actually get rid of remaining cancer cells, whereas the scan dose is just so they can see where in my body the iodine is uptaking and can then have an idea where the high TG levels are coming from. It's a much smaller dose, and I only have to be in isolation for three or four days as opposed to seven. I think they might even use a different isotope - I-123 as opposed to I-131 - but I'm not quite sure about that.
So...yeah. This is all pretty bad news. I'm still kind of shocked. I've already been through about 75 different emotions this week so at this point I don't even know what to feel or say. Here are the two major things I have been thinking today:
1) I would very much like to find everyone who told me that I had "the best type of cancer" and that "if I could choose a type of cancer to get this would be the one to choose" (and bear in mind, reader(s), that this includes literally every doctor I've ever met since I was diagnosed) and punch them right in the face. Some of them possibly in the reproductive organs as well.
2) Let me preface this one with the disclaimer that it is a JOKE, and that I would not ever actually wish any type of cancer on any person for any reason because I have a soul. However. I was driving to Wal-mart this morning and heard a Kesha - excuse me, it's Ke$ha - song come on the radio, and I have decided that if I could give my cancer to anyone else I would transfer it to her. That way she could have something to sing (I use the term "sing" loosely here) about besides what a drunken whore she is and maybe spend her time doing something better than finding outrageously stupid things to wear onstage and trying to be a more vapid version of Lady Gaga. Since she seems to like drugs so much I'm sure the young adult cancer community and I could find some really fun ones to give her. After some of those I can assure you that whatever she feels like when she wakes up the next morning, it will certainly be nothing like P-Diddy. And also maybe she could find the S that she seems to have misplaced from her name! Plus, I just think she needs this cancer more than I do. I like to think that I was at least a decent person before I got cancer; maybe not great, certainly not perfect, but at least decent. So shouldn't all the strength and depth and character-building that everyone keeps saying I've gained from all my struggles go to someone who really needs them? I think so. And that is why I would like to donate my cancer to someone who can really use it. Someone like stupid annoying Ke$ha.
Okay, I think I'm done being offensive now. I should also probably apologize for not explaining all of this sooner, but I will admit that I spent most of yesterday drinking. Anyone who can honestly tell me they would have done something else is a saint and should immediately contact the Catholic Church to apply for an "St" in front of their name. Otherwise I hope you will understand and forgive me for the reporting delay. I hate to toy with your emotions like this, dear reader(s), but unfortunately this situation is not under my control. Angry letters can be directed to my cancer at the following address:
Papillary(?) Thyroid Cancer
00010 Cell Mutation Lane
Somewhere in RG's body, USA
As usual, solid facts will continue to enter this blog as I receive them. Enjoy your ride on the Cancer Rollercoaster ride, folks...unfortunately it looks like it may be a bumpy one.
Love,
RG
Yesterday was the weirdest possible kind of day. The kind where your specialist's assistant calls you at 1 pm with good news, and then your specialist calls you four hours later with bad news. That's right, folks: the Cancer Rollercoaster is moving full speed ahead, with more twists and turns than you ever wanted or thought possible.
AND THE BLOG GETS INTERESTING ONCE AGAIN. WOOHOO!
Here's the deal. I explained TSH yesterday, but I did not explain TG. Thyroglobulin - TG - is basically an indicator of thyroid tissue in the body. In my case, thyroid tissue = cancer. So higher TG = more cancer. We want my TG level to be 0. I had, as you may remember, a blood test on Tuesday, and since Wednesday I had been asking my endo's assistants if they had my TG results in. Apparently they did not get them until late yesterday, when my endo herself finally called me to tell me that my TG is at 45.
Again, ideal level is 0. My TG before my last surgery was 18. This means that my cancer is still growing even AFTER that surgery, and since my surgeon pretty much cleared my neck out back in April it's likely at this point that there's thyroid cancer hanging out somewhere in my body. The bad news is my doctor has no idea where.
I would like to clarify for everyone - before you get too freaked out - that if thyroid cancer is found elsewhere in my body it is still thyroid cancer, not another kind. For example, if they find it near my lungs it is still metastatic (metastatic basically just means it moved) thyroid cancer, NOT lung cancer. This means that it could still respond to radioactive iodine. The bad side of this, as explained by my endo, is that it is possible for my papillary thyroid cancer to have re-differentiated into a different type of thyroid cancer. There are four types - papillary is the "best", the next two are meh, and one is really really scary and awful. But right now we're going to pretend that one doesn't exist, k?
What's happening now: I will go to the nuclear medicine place on Monday. They will give me a scan dose - as opposed to the previously scheduled treatment dose - of radioactive iodine. The difference between the two is that the treatment dose is intended to actually get rid of remaining cancer cells, whereas the scan dose is just so they can see where in my body the iodine is uptaking and can then have an idea where the high TG levels are coming from. It's a much smaller dose, and I only have to be in isolation for three or four days as opposed to seven. I think they might even use a different isotope - I-123 as opposed to I-131 - but I'm not quite sure about that.
So...yeah. This is all pretty bad news. I'm still kind of shocked. I've already been through about 75 different emotions this week so at this point I don't even know what to feel or say. Here are the two major things I have been thinking today:
1) I would very much like to find everyone who told me that I had "the best type of cancer" and that "if I could choose a type of cancer to get this would be the one to choose" (and bear in mind, reader(s), that this includes literally every doctor I've ever met since I was diagnosed) and punch them right in the face. Some of them possibly in the reproductive organs as well.
2) Let me preface this one with the disclaimer that it is a JOKE, and that I would not ever actually wish any type of cancer on any person for any reason because I have a soul. However. I was driving to Wal-mart this morning and heard a Kesha - excuse me, it's Ke$ha - song come on the radio, and I have decided that if I could give my cancer to anyone else I would transfer it to her. That way she could have something to sing (I use the term "sing" loosely here) about besides what a drunken whore she is and maybe spend her time doing something better than finding outrageously stupid things to wear onstage and trying to be a more vapid version of Lady Gaga. Since she seems to like drugs so much I'm sure the young adult cancer community and I could find some really fun ones to give her. After some of those I can assure you that whatever she feels like when she wakes up the next morning, it will certainly be nothing like P-Diddy. And also maybe she could find the S that she seems to have misplaced from her name! Plus, I just think she needs this cancer more than I do. I like to think that I was at least a decent person before I got cancer; maybe not great, certainly not perfect, but at least decent. So shouldn't all the strength and depth and character-building that everyone keeps saying I've gained from all my struggles go to someone who really needs them? I think so. And that is why I would like to donate my cancer to someone who can really use it. Someone like stupid annoying Ke$ha.
Okay, I think I'm done being offensive now. I should also probably apologize for not explaining all of this sooner, but I will admit that I spent most of yesterday drinking. Anyone who can honestly tell me they would have done something else is a saint and should immediately contact the Catholic Church to apply for an "St" in front of their name. Otherwise I hope you will understand and forgive me for the reporting delay. I hate to toy with your emotions like this, dear reader(s), but unfortunately this situation is not under my control. Angry letters can be directed to my cancer at the following address:
Papillary(?) Thyroid Cancer
00010 Cell Mutation Lane
Somewhere in RG's body, USA
As usual, solid facts will continue to enter this blog as I receive them. Enjoy your ride on the Cancer Rollercoaster ride, folks...unfortunately it looks like it may be a bumpy one.
Love,
RG
8/13/2010
Phew.
Dear reader(s):
Good news! Biopsy came back clean. Now the blog gets boring again.
Still basically just...hanging around, waiting. While I am, of course, glad that everything turned out okay, I admit that I'm a bit annoyed that this all happened for no reason. But...oh well.
My doctor's assistant (who has become my BFF of all things thyroid-related) said they'd call me on Monday to tell me when the imaging place can reschedule my RAI. Because god forbid anyone would throw a cancer patient a freakin' bone and actually do some work on a weekend. *LE SIGH* Until then, I'll still be here in limbo, dreaming dreams of milk and cheese and chocolate as I get hypo-er and hypo-er.
This would probably be a good time to explain what exactly I mean when I say that I'm "hypo", especially since I've been getting asked a lot lately. "Hypo" is just the fun thyca patient slang term for "hypothyroid". And of course, "thyca" is our fun slang term for "thyroid cancer". Cancer patients like abbreviations. Try to keep up. Anyway, hypothyroid is what they call it when your thyroid (or in my case, large empty wasteland where my thyroid used to be) isn't producing enough thyroid hormone and is causing all sorts of fun side effects for you, the thyroid-challenged.
Web-MD lists some of these side effects as follows:
My mom asked me the other day what it actually felt like to be hypo. I told her it's kind of like that feeling you have when you have a really bad cold, where your whole body feels wrecked and exhausted all the time and you sort of generally feel like you've been hit by a truck. That, mixed with the mood swings, depression, being cold all the time, and having a sort of mental hazy-ness should give you a general idea of how I feel.
No, it's probably not nearly as bad as the side effects of chemo. But it's also not a cake walk, either. For a point of reference, I will explain TSH levels. Thyroid Stimulating Hormone (TSH) is produced by the pituitary gland and it, in turn, causes the thyroid to release T3 and T4, which, in my understanding, are the hormones that do all the work, such as regulating metabolism and all that fun stuff. So TSH levels are used to measure how overactive or underactive a person's thyroid is. If your TSH is low, you're hyPERthryoid and are overproducing hormone, if it's high you're hyPOthyroid, like me, and are underproducing. Yes, this does seem backward, and no, despite having asked my endocrinologist multiple times I still don't really understand why. Just...low TSH means hyper, high TSH means hypo. Anyway, my point is that the "normal" TSH range for adults is about 0.4-4.5. Mine, as of Tuesday's blood test, was 141. That, dear reader(s), is very, very, hypo.
I also found out from the doctor who met with me before my very first RAI that were I to stop taking my thyroid meds for a very very long time, say 3-4 months, I would eventually die. This is why I am constantly annoyed at the fact that my insurance company only covers a dollar - ONE dollar - of my thirty dollar hormone replacement meds every month, as I need to take them for the rest of my life and quite literally need them to live. I don't know exactly which medications these companies have decided are necessary enough for them to pay for, but apparently my life-giving synthroid does not qualify. *LE SIGH*
So, hopefully that explains the hypo-ness. I can, of course, answer any other questions about it in the comments (which, btw, are easier for me to receive here on the actual blog than on Facebook), or both thyca.org and webMD are pretty good ways to find info.
Also thanks for everyone's concern and for trudging through my long-winded writings.
Hypothyroidcally yours,
RG
Good news! Biopsy came back clean. Now the blog gets boring again.
Still basically just...hanging around, waiting. While I am, of course, glad that everything turned out okay, I admit that I'm a bit annoyed that this all happened for no reason. But...oh well.
My doctor's assistant (who has become my BFF of all things thyroid-related) said they'd call me on Monday to tell me when the imaging place can reschedule my RAI. Because god forbid anyone would throw a cancer patient a freakin' bone and actually do some work on a weekend. *LE SIGH* Until then, I'll still be here in limbo, dreaming dreams of milk and cheese and chocolate as I get hypo-er and hypo-er.
This would probably be a good time to explain what exactly I mean when I say that I'm "hypo", especially since I've been getting asked a lot lately. "Hypo" is just the fun thyca patient slang term for "hypothyroid". And of course, "thyca" is our fun slang term for "thyroid cancer". Cancer patients like abbreviations. Try to keep up. Anyway, hypothyroid is what they call it when your thyroid (or in my case, large empty wasteland where my thyroid used to be) isn't producing enough thyroid hormone and is causing all sorts of fun side effects for you, the thyroid-challenged.
Web-MD lists some of these side effects as follows:
- Feeling tired, weak, or depressed.
- Dry skin and brittle nails.
- Not being able to stand the cold.
- Constipation.
- Memory problems or having trouble thinking clearly.
- Heavy or irregular menstrual periods.
My mom asked me the other day what it actually felt like to be hypo. I told her it's kind of like that feeling you have when you have a really bad cold, where your whole body feels wrecked and exhausted all the time and you sort of generally feel like you've been hit by a truck. That, mixed with the mood swings, depression, being cold all the time, and having a sort of mental hazy-ness should give you a general idea of how I feel.
No, it's probably not nearly as bad as the side effects of chemo. But it's also not a cake walk, either. For a point of reference, I will explain TSH levels. Thyroid Stimulating Hormone (TSH) is produced by the pituitary gland and it, in turn, causes the thyroid to release T3 and T4, which, in my understanding, are the hormones that do all the work, such as regulating metabolism and all that fun stuff. So TSH levels are used to measure how overactive or underactive a person's thyroid is. If your TSH is low, you're hyPERthryoid and are overproducing hormone, if it's high you're hyPOthyroid, like me, and are underproducing. Yes, this does seem backward, and no, despite having asked my endocrinologist multiple times I still don't really understand why. Just...low TSH means hyper, high TSH means hypo. Anyway, my point is that the "normal" TSH range for adults is about 0.4-4.5. Mine, as of Tuesday's blood test, was 141. That, dear reader(s), is very, very, hypo.
I also found out from the doctor who met with me before my very first RAI that were I to stop taking my thyroid meds for a very very long time, say 3-4 months, I would eventually die. This is why I am constantly annoyed at the fact that my insurance company only covers a dollar - ONE dollar - of my thirty dollar hormone replacement meds every month, as I need to take them for the rest of my life and quite literally need them to live. I don't know exactly which medications these companies have decided are necessary enough for them to pay for, but apparently my life-giving synthroid does not qualify. *LE SIGH*
So, hopefully that explains the hypo-ness. I can, of course, answer any other questions about it in the comments (which, btw, are easier for me to receive here on the actual blog than on Facebook), or both thyca.org and webMD are pretty good ways to find info.
Also thanks for everyone's concern and for trudging through my long-winded writings.
Hypothyroidcally yours,
RG
8/12/2010
Cancer Limbo
Dear reader(s):
Well, I promised you updates, so here goes:
Biopsy was today. It went fine. This was my third so I'm pretty much used to them at this point. I was, in fact, filling out paperwork beforehand and had some trouble fitting in my answer to the question "List any other biopsies/surgeries in the affected area along with dates and hospital names". If I were Jeff Foxworthy the joke here would be, "You know you're a cancer patient when...your list of past procedures looks more like a novel than a list".
Or perhaps more cleverly worded than that. But you get the idea.
Anyway, the whole thing was pretty routine. They found the lymph node they were looking for (sort of behind my right lower jaw area), stuck me nine times with a needle, sent me home. The radiologist told me before she left that she'd gotten a quick look at about half of the samples and hadn't seen anything yet that looked cancerous. So...so far so good I guess. Official results probably won't be in until tomorrow afternoon, but we explained my situation and the doctor said she'd try to get them done as soon as possible.
Until then, we remain in Cancer Limbo. My absolute favorite place to be, where birds sing and flowers blossom, and candy gumdrops rain from the sky. Ah, Cancer Limbo. Just one of the many scenic Sick World destinations for you to choose from. Or, actually, not choose, because you're stuck in Sick World whether you like it or not. It's like the Hotel California, but less fun and without an awesome song.
So, dear reader(s), that is all I have to tell you until tomorrow. I would send you a "Wish You Were Here" postcard, but that would be cruel.
Love,
RG.
Well, I promised you updates, so here goes:
Biopsy was today. It went fine. This was my third so I'm pretty much used to them at this point. I was, in fact, filling out paperwork beforehand and had some trouble fitting in my answer to the question "List any other biopsies/surgeries in the affected area along with dates and hospital names". If I were Jeff Foxworthy the joke here would be, "You know you're a cancer patient when...your list of past procedures looks more like a novel than a list".
Or perhaps more cleverly worded than that. But you get the idea.
Anyway, the whole thing was pretty routine. They found the lymph node they were looking for (sort of behind my right lower jaw area), stuck me nine times with a needle, sent me home. The radiologist told me before she left that she'd gotten a quick look at about half of the samples and hadn't seen anything yet that looked cancerous. So...so far so good I guess. Official results probably won't be in until tomorrow afternoon, but we explained my situation and the doctor said she'd try to get them done as soon as possible.
Until then, we remain in Cancer Limbo. My absolute favorite place to be, where birds sing and flowers blossom, and candy gumdrops rain from the sky. Ah, Cancer Limbo. Just one of the many scenic Sick World destinations for you to choose from. Or, actually, not choose, because you're stuck in Sick World whether you like it or not. It's like the Hotel California, but less fun and without an awesome song.
So, dear reader(s), that is all I have to tell you until tomorrow. I would send you a "Wish You Were Here" postcard, but that would be cruel.
Love,
RG.
8/11/2010
In short, FML.
Dear Reader(s),
Well, despite my valiant superheroic efforts on my diet, the evil thyroid cancer has one-upped me yet again. The good news is that this blog just got more interesting. The bad news is that this blog just got more interesting.
I arrived in my hometown on Monday for an ultrasound, followed by a blood test yesterday, and was scheduled to take my radioactive iodine tomorrow morning. I had expected these tests to simply be routine and to go ahead with my RAI as planned.
No cancer-fighting superhero should ever make this assumption. Let that be noted.
I received a phone call from my endocrinologist at about noon today saying that she had canceled my RAI appointment for tomorrow. Apparently my ultrasound showed an irregular lymph node on the right hand side of my neck that my endo wants to have biopsied before we continue with treatment. If it is benign, we can go ahead and reschedule my RAI, if not then I get to have more surgery! Yay!! Just the thing I very most wanted!!
You, dear reader, will not be surprised to hear that I am pissed. Not at my doctor, who is just doing her job, or really at anyone in particular, but simply pissed off in general. Mostly due to the fact that my boyfriend's and my one-year anniversary is in a few days, and we had planned on him taking the 18th-20th off from work and coming down to my hometown to spend what would have been the last day of my isolation with my family and then go out for a nice dinner and spend a night in a hotel once I was released from lockdown. Now, of course, this is completely ruined. We had a room reservation and everything. The worst part is that said boyfriend recently took a full-time position at work, which makes it now infinitely harder - and it was hard before - for him to get time off at all. He took said position for the benefits, but doesn't receive any of them for another three months while he is on a "probationary period". So basically he gets zero vacation or sick days until October. Which means the whole anniversary thing is totally fucked. Plus if I do need surgery there's probably no way he can come and be with me for any of it. Awesome.
Not only that, of course, but I now have to inform both of my workplaces that I will not be returning when I said I would be, and in fact do not know when I will be back at all. And of course I have to be on the Diet From Hell AND off of my medication for even longer - and lemme tell you, I've been feeling super great without my little happy pills lately.
Thyroid cancer, you are a bitch.
You see, dear reader(s), this is ultimately the worst part of having cancer, at least in my opinion. All I want is to live my life and make my plans like every other person on the planet, and I feel like every time I try or make any sort of headway I just get knocked flat on my ass again. Over and over and over.
People don't seem to understand why it bothers me when they say that my cancer has a "cure" rather than a "highly effective treatment". "Not a cure- well, what's the difference?" they might ask. This is the difference. This right here. When you cure something, you give someone a pill and it does not come back. They don't revolve their lives, their careers, and their relationships around something that could literally do whatever the fuck it wants at any given time regardless of what plans you make or what you want to do. A highly effective treatment is great, and I am immensely grateful that radioactive iodine works so well, because it means I don't really have to worry that I'll be dead five years from now. At least, not from this. But calling it a cure denies the instability of my disease and denies all the time that my family and friends and I have spent in exactly this situation, hearing "I don't know" and "we can tell you when we get the test results back" and all the rearranging we've had to do to structure our entire lives around a disease that, no, does NOT. HAVE. A CURE.
So there's my little cancer patient rant for today. I'm sure there will be many more to come. Stay tuned for updates - I'm going to try and keep information posted when I get it.
All I know is if I have to have another goddamn surgery I'm gonna freakin' scream.
Love,
RG.
Well, despite my valiant superheroic efforts on my diet, the evil thyroid cancer has one-upped me yet again. The good news is that this blog just got more interesting. The bad news is that this blog just got more interesting.
I arrived in my hometown on Monday for an ultrasound, followed by a blood test yesterday, and was scheduled to take my radioactive iodine tomorrow morning. I had expected these tests to simply be routine and to go ahead with my RAI as planned.
No cancer-fighting superhero should ever make this assumption. Let that be noted.
I received a phone call from my endocrinologist at about noon today saying that she had canceled my RAI appointment for tomorrow. Apparently my ultrasound showed an irregular lymph node on the right hand side of my neck that my endo wants to have biopsied before we continue with treatment. If it is benign, we can go ahead and reschedule my RAI, if not then I get to have more surgery! Yay!! Just the thing I very most wanted!!
You, dear reader, will not be surprised to hear that I am pissed. Not at my doctor, who is just doing her job, or really at anyone in particular, but simply pissed off in general. Mostly due to the fact that my boyfriend's and my one-year anniversary is in a few days, and we had planned on him taking the 18th-20th off from work and coming down to my hometown to spend what would have been the last day of my isolation with my family and then go out for a nice dinner and spend a night in a hotel once I was released from lockdown. Now, of course, this is completely ruined. We had a room reservation and everything. The worst part is that said boyfriend recently took a full-time position at work, which makes it now infinitely harder - and it was hard before - for him to get time off at all. He took said position for the benefits, but doesn't receive any of them for another three months while he is on a "probationary period". So basically he gets zero vacation or sick days until October. Which means the whole anniversary thing is totally fucked. Plus if I do need surgery there's probably no way he can come and be with me for any of it. Awesome.
Not only that, of course, but I now have to inform both of my workplaces that I will not be returning when I said I would be, and in fact do not know when I will be back at all. And of course I have to be on the Diet From Hell AND off of my medication for even longer - and lemme tell you, I've been feeling super great without my little happy pills lately.
Thyroid cancer, you are a bitch.
You see, dear reader(s), this is ultimately the worst part of having cancer, at least in my opinion. All I want is to live my life and make my plans like every other person on the planet, and I feel like every time I try or make any sort of headway I just get knocked flat on my ass again. Over and over and over.
People don't seem to understand why it bothers me when they say that my cancer has a "cure" rather than a "highly effective treatment". "Not a cure- well, what's the difference?" they might ask. This is the difference. This right here. When you cure something, you give someone a pill and it does not come back. They don't revolve their lives, their careers, and their relationships around something that could literally do whatever the fuck it wants at any given time regardless of what plans you make or what you want to do. A highly effective treatment is great, and I am immensely grateful that radioactive iodine works so well, because it means I don't really have to worry that I'll be dead five years from now. At least, not from this. But calling it a cure denies the instability of my disease and denies all the time that my family and friends and I have spent in exactly this situation, hearing "I don't know" and "we can tell you when we get the test results back" and all the rearranging we've had to do to structure our entire lives around a disease that, no, does NOT. HAVE. A CURE.
So there's my little cancer patient rant for today. I'm sure there will be many more to come. Stay tuned for updates - I'm going to try and keep information posted when I get it.
All I know is if I have to have another goddamn surgery I'm gonna freakin' scream.
Love,
RG.
8/06/2010
Short but sweet
Dear reader(s):
I've been meaning to write more about my low-iodine diet, and I will, but I only have about five minutes as I shuttle between minimum-wage jobs, so for now you will merely receive a hastily composed haiku:
Oh, dieting sucks.
So many foods that tempt - yet,
I am a rockstar.
(copyright 2010)
- RG
I've been meaning to write more about my low-iodine diet, and I will, but I only have about five minutes as I shuttle between minimum-wage jobs, so for now you will merely receive a hastily composed haiku:
Oh, dieting sucks.
So many foods that tempt - yet,
I am a rockstar.
(copyright 2010)
- RG
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