Dear reader(s),
I'm sure not many people are still checking this, since I haven't posted in awhile. There really hasn't been anything to report medically for the past few months, and I'd rather stay on-topic than use this blog to discuss my personal life. But, fortunately (?), I'm back at Mayo Clinic now doing more interesting things for y'all to read about.
My family and I drove up to Rochester on the 27th and have been staying here for the past few days. We checked out the Mall of America, did a lot of shopping, saw a cool aquarium. Yesterday I met with my Mayo Endo, and today I had my first of two rounds of alcohol ablation. My coworker referred to it a couple weeks ago as an Alcoholic Vampire bite, which makes me wonder what an Alcohol Vampire would be like. Would it be like a normal vampire, but really drunk? Since vampires are technically dead and don't have blood, how would you gauge its BAC? Or would their blood simply be replaced by alcohol? Maybe they just turn all the water in your body to wine, like Jesus. Or... was Jesus an Alcohol Vampire himself? 0.0
Maybe I should stop thinking about this before I'm struck down for Blasphemy.
Okay, so, the actual event. Essentially, the procedure was pretty similar to what they do when I have a needle biopsy. I went up to Radiology, they put me in an ultrasound room and took an ultrasound of my neck, then the radiologist numbed me up and stuck a needle in my neck. With the biopsy, they do usually 6-10 stabs to collect tissue - they always say they're gonna do 4-6 but it's usually 8-10. This time it was just one poke, but the needle was in there a lot longer, and the radiologist was injecting alcohol into one of my lymph nodes the whole time. I was told the alcohol would probably burn, and it did, but it wasn't as bad as I thought it would be. I've had worse migraines. My neck is pretty sore right now, but not much more than it usually is after a biopsy.
This is definitely vastly preferable to surgery or I-131 therapy. No incisions and I get to eat whatever I want. :) And speaking of radioactive iodine, I've found some info I think is interesting - and a bit confusing.
In the main Mayo building they have a Cancer Education Center, which is kinda like a little library with books and pamphlets and things about cancer (my brother even found a book called "My Brother or Sister Has Cancer - A Book For Teens", which I told him to check out but he said he can't read...). They let me take a book out last night about thyroid disease, and I read the chapter about thyroid cancer specifically. It was written by one of the Mayo Endos (not mine) and an endo from Edinborough (which seems to be a center of a lot of thyroid research).
In the section on radioactive iodine treatment they said - rather emphatically - that radioactive iodine should be considered as an option following surgery but should really only be used in a select number of cases, and also mentioned that it can potentially lead to other cancers later in life. That last part I already knew, but I was surprised to hear (see?) a doctor recommend using radioactive iodine sparingly.
Literally every thyroid cancer patient I have ever met or spoken to has had RAI after their initial surgery. When I was diagnosed my doctors called it a "silver bullet" and praised it as a wonderful magic cure that would wipe out my cancer and end poverty and bring world peace. Obviously it hasn't actually done any of those things (yet). The book also said what my Mayo Endo told me, which is that radioiodine is often ineffective against lymph nodes with papillary cancer in them - like mine.
So it would seem that opinions about this "silver bullet" range pretty widely among endocrinologists, which made me wonder why I was led to believe, two years ago, that it was the answer to all my prayers. Curious, no? As much as I like my regular endo, this discovery makes me really glad I decided to get two opinions - obviously if there are two sides to this story I want to hear them both.
And I'm definitely doing more research from now on before I swallow radioactive materials.
Tomorrow is round 2 of Alcoholic Vampire Bite. I hear it's supposed to hurt even more since my neck is already sore from the first one. I'll update you, dear reader(s), with detailed descriptions of my pain, since I know that's what you all want to hear.
And if I turn into an Alcohol Vampire, lock your doors.
Not-so-drunkenly yours,
RG
12/29/2010
10/15/2010
Synthroid Saves The Day
Dear reader(s):
First off, I should apologize for ignoring y'all for so long. My life here in Chicago is pretty hectic, and as a graduate student in a writing program I don't have much time to sit and write things that aren't academic.
So that's my big excuse. In medical news, the docs at Mayo seem to think I'm a good candidate for the alcohol ablation procedure, and I'm probably going to have it done in December, maybe between Christmas and New Year's.
Also, I'm back on my Synthroid. It feels AMAZING. When I started taking it, I felt better almost right away. Which doesn't even make sense, because it's supposed to take weeks. But I swear, within a few days I had tons more energy and felt like a human instead of a walking zombie. I guess my point, in summary, is that I <3 Synthroid.
Still tired a lot, but that's to be expected when you live a life of stress and insanity. Oh well. Gotta go back to the grind, but I will keep my reader(s) updated.
Energetically yours,
RG
First off, I should apologize for ignoring y'all for so long. My life here in Chicago is pretty hectic, and as a graduate student in a writing program I don't have much time to sit and write things that aren't academic.
So that's my big excuse. In medical news, the docs at Mayo seem to think I'm a good candidate for the alcohol ablation procedure, and I'm probably going to have it done in December, maybe between Christmas and New Year's.
Also, I'm back on my Synthroid. It feels AMAZING. When I started taking it, I felt better almost right away. Which doesn't even make sense, because it's supposed to take weeks. But I swear, within a few days I had tons more energy and felt like a human instead of a walking zombie. I guess my point, in summary, is that I <3 Synthroid.
Still tired a lot, but that's to be expected when you live a life of stress and insanity. Oh well. Gotta go back to the grind, but I will keep my reader(s) updated.
Energetically yours,
RG
9/24/2010
BE AWARE.
Reader(s):
Also, I forgot to tell you that I realized yesterday that September is Thyroid Cancer Awareness month. Apparently we share September with several other cancers also. And yes, I know September is almost over, but that just means we have to pack extra awareness into the next few days! You can do it, faithful reader(s)!
Click here for more info. And don't forget to GET YOUR NECK CHECKED for nodules. And if you have any symptoms of hypothyroidism (which my reader(s) should know by now after I've complained about them so much), go to your doctor and ask them to do a blood test. Thyroid problems are very common, especially in women, and some doctors think that certain thyroid diseases can lead to thyroid cancer.
So be aware, good people! And love your little butterfly-shaped friend, if only because I can no longer love mine.
Painfully aware,
RG
Also, I forgot to tell you that I realized yesterday that September is Thyroid Cancer Awareness month. Apparently we share September with several other cancers also. And yes, I know September is almost over, but that just means we have to pack extra awareness into the next few days! You can do it, faithful reader(s)!
Click here for more info. And don't forget to GET YOUR NECK CHECKED for nodules. And if you have any symptoms of hypothyroidism (which my reader(s) should know by now after I've complained about them so much), go to your doctor and ask them to do a blood test. Thyroid problems are very common, especially in women, and some doctors think that certain thyroid diseases can lead to thyroid cancer.
So be aware, good people! And love your little butterfly-shaped friend, if only because I can no longer love mine.
Painfully aware,
RG
Mayo Magic
Reader(s):
Well, thanks to the doctor/detectives at the Mayo Clinic, we have now solved the mystery of the High-TG levels.
Before I reveal the culprit, I would like to describe my Mayo experience from the beginning. Also, like any good mystery writer, I just want to build up some suspense.
First of all, this place is freakin' ginormous. And swanky. Mayo Clinic pretty much takes up all of downtown Rochester, and its various buildings are all connected to each other and to nearby buildings and hotels via an extremely impressive network of underground tunnels (although it's all foot traffic they call it the subway) and above-ground skyways. There are all kinds of cool things interspersed around the first floor and the subway such as a Mayo history display, tons of artwork, a Cancer Education Center that has Yoga and Tai-Chi classes almost every day, and lots of various shops and food stores.
The main building is nineteen stories high. The endocrinology department, where I spent most of my time, is on the eighteenth floor. Despite the huge number of doctors and patients and facilities, everything at Mayo is super-efficient. Yesterday I had one of the fastest blood tests of my life, despite the fact that there were at least 20-30 people in the waiting room with me. My procedures today were very efficient also. Overall my mom and I were extremely impressed about how well everything was done. It's pretty clear why this place has such a great reputation.
So now that we have the setting down, I'll explain what actually happened.
When I first met with the doctor yesterday morning, he basically told me that he didn't think having an RAI treatment at this stage is a good idea. Since we would be essentially just treating a number (my TG level) without any other evidence of cancer, and since I'm young and my type of cancer is very slow-growing, he told us that he would prefer to wait and see what develops rather than give me a high dose of RAI without knowing if it would even be effective, especially since high RAI doses can have negative side effects in the long term.
He ordered a blood test and an ultrasound, and told us that their radiology department often finds things when previous scans haven't. So I had a blood test yesterday and an ultrasound this morning. The ultrasound did show two suspicious lymph nodes, and I had one of them biopsied right away. When I met with the doctor again this afternoon he told us that the biopsy was positive. Which means we have now found our culprit. It's a sneaky little node on the left side of my neck near my collarbone, right near my scar. Tricky little bastard.
One of the things the doctor explained was that because papillary thyroid cancer is so slow-growing, cancerous lymph nodes can take a long time to develop to a size that can be seen and/or treated. Yesterday he told us we should start thinking of my cancer as a chronic disease, rather than something that needs to be gotten rid of urgently like other cancers. I still don't know how I feel about the idea of having to go through this again and again for the rest of my life. I suppose it's better than having a bad long-term prognosis, but it also means I have to keep waiting around and that's pretty much my least favorite thing ever. Patience has never been a virtue that I have possessed.
Nevertheless, we have decided to wait for another few months or so before we take care of the aforementioned lymph node. Normally I would have it removed surgically, but since I just had surgery in April the doctor said he would prefer to wait at least a year before having another one. And I'm certainly not thrilled about going under the knife again so soon.
Also, Mayo has recently pioneered a procedure called alcohol ablation that they've been using to get rid of metastatic thyroid cancer lymph nodes in the neck. From what I understand, it involves using alcohol to blow up the cancerous lymph nodes rather than removing them surgically. Mayo is one of the only places in the country that does this procedure, and the doctor said he would talk to the radiology department about whether this is a possibility for me. If so, I'll probably come back to Mayo within the next six months or so and have that done.
No matter what, I probably won't have RAI again. At least not for a long time. The doctor said that lymph nodes usually don't respond well to radioactive iodine, and since mine didn't show up on the RAI scan last month it doesn't seem likely that they would be affected by an RAI treatment anyway. I'm pretty happy that I don't have to go through it again. All my other doctors have talked about how it's a magic bullet and it's super effective for thyroid cancer and blah blah blah, but I kind of think it sucks. At least when I'm going through it. So good riddance, RAI, LID, and all you other stupid un-fun acronyms.
Unfortunately that does mean I won't be radioactive again for some time. I might have to change my pen name. Any ideas? Thyroid Diva, maybe? Papillary Princess? Given that I've now had three biopsies in the past year I've been considering calling myself the Biopsy Queen. But maybe that one's not so good.
For now, I'm going to go back to my life, but I'll probably be back here in Rochester soon. And I will try to keep updating about cancer-related issues when they arise and/or whenever I actually have time to sit at my computer and write things.
Homeward Bound,
RG
Well, thanks to the doctor/detectives at the Mayo Clinic, we have now solved the mystery of the High-TG levels.
Before I reveal the culprit, I would like to describe my Mayo experience from the beginning. Also, like any good mystery writer, I just want to build up some suspense.
First of all, this place is freakin' ginormous. And swanky. Mayo Clinic pretty much takes up all of downtown Rochester, and its various buildings are all connected to each other and to nearby buildings and hotels via an extremely impressive network of underground tunnels (although it's all foot traffic they call it the subway) and above-ground skyways. There are all kinds of cool things interspersed around the first floor and the subway such as a Mayo history display, tons of artwork, a Cancer Education Center that has Yoga and Tai-Chi classes almost every day, and lots of various shops and food stores.
The main building is nineteen stories high. The endocrinology department, where I spent most of my time, is on the eighteenth floor. Despite the huge number of doctors and patients and facilities, everything at Mayo is super-efficient. Yesterday I had one of the fastest blood tests of my life, despite the fact that there were at least 20-30 people in the waiting room with me. My procedures today were very efficient also. Overall my mom and I were extremely impressed about how well everything was done. It's pretty clear why this place has such a great reputation.
So now that we have the setting down, I'll explain what actually happened.
When I first met with the doctor yesterday morning, he basically told me that he didn't think having an RAI treatment at this stage is a good idea. Since we would be essentially just treating a number (my TG level) without any other evidence of cancer, and since I'm young and my type of cancer is very slow-growing, he told us that he would prefer to wait and see what develops rather than give me a high dose of RAI without knowing if it would even be effective, especially since high RAI doses can have negative side effects in the long term.
He ordered a blood test and an ultrasound, and told us that their radiology department often finds things when previous scans haven't. So I had a blood test yesterday and an ultrasound this morning. The ultrasound did show two suspicious lymph nodes, and I had one of them biopsied right away. When I met with the doctor again this afternoon he told us that the biopsy was positive. Which means we have now found our culprit. It's a sneaky little node on the left side of my neck near my collarbone, right near my scar. Tricky little bastard.
One of the things the doctor explained was that because papillary thyroid cancer is so slow-growing, cancerous lymph nodes can take a long time to develop to a size that can be seen and/or treated. Yesterday he told us we should start thinking of my cancer as a chronic disease, rather than something that needs to be gotten rid of urgently like other cancers. I still don't know how I feel about the idea of having to go through this again and again for the rest of my life. I suppose it's better than having a bad long-term prognosis, but it also means I have to keep waiting around and that's pretty much my least favorite thing ever. Patience has never been a virtue that I have possessed.
Nevertheless, we have decided to wait for another few months or so before we take care of the aforementioned lymph node. Normally I would have it removed surgically, but since I just had surgery in April the doctor said he would prefer to wait at least a year before having another one. And I'm certainly not thrilled about going under the knife again so soon.
Also, Mayo has recently pioneered a procedure called alcohol ablation that they've been using to get rid of metastatic thyroid cancer lymph nodes in the neck. From what I understand, it involves using alcohol to blow up the cancerous lymph nodes rather than removing them surgically. Mayo is one of the only places in the country that does this procedure, and the doctor said he would talk to the radiology department about whether this is a possibility for me. If so, I'll probably come back to Mayo within the next six months or so and have that done.
No matter what, I probably won't have RAI again. At least not for a long time. The doctor said that lymph nodes usually don't respond well to radioactive iodine, and since mine didn't show up on the RAI scan last month it doesn't seem likely that they would be affected by an RAI treatment anyway. I'm pretty happy that I don't have to go through it again. All my other doctors have talked about how it's a magic bullet and it's super effective for thyroid cancer and blah blah blah, but I kind of think it sucks. At least when I'm going through it. So good riddance, RAI, LID, and all you other stupid un-fun acronyms.
Unfortunately that does mean I won't be radioactive again for some time. I might have to change my pen name. Any ideas? Thyroid Diva, maybe? Papillary Princess? Given that I've now had three biopsies in the past year I've been considering calling myself the Biopsy Queen. But maybe that one's not so good.
For now, I'm going to go back to my life, but I'll probably be back here in Rochester soon. And I will try to keep updating about cancer-related issues when they arise and/or whenever I actually have time to sit at my computer and write things.
Homeward Bound,
RG
9/23/2010
Minnesota Misadventures
Reader(s),
Radioactive Girl has arrived in Rochester. Unfortunately, I almost did not arrive at all. Last night's travels got pretty crazy. I'll explain:
My mother and I had tickets on a flight from O'Hare to Rochester that was supposed to leave at 7:30 pm last night. We were waiting at the gate, and at 7 pm, when we were supposed to start boarding, they told us we were going to be delayed another half hour. Okay, fine. Unfortunately, this kept happening every half hour until 9:30. Mom was checking the weather in Rochester and we knew there were some intense storms going on, so we assumed our flight would be delayed for a few hours. However, at 9:30 they told us that it was canceled.
The airport folks were telling everyone that they could switch to the flight leaving for Rochester at 7:40 this morning. My appointment with the Mayo endocrinologist was at 6:45. Via basic subtraction we can see how this is a problem. After berating and begging various O'Hare employees, my mother and I finally managed to get on a 10:30 pm flight to Minneapolis, which is only about an hour and a half north of Rochester.
At the Minneapolis airport we had to rent a car. It was around midnight by then, and there were several people in line ahead of us due to the canceled Rochester flight. My mom decided we should ask the man in front of us if he was going to Rochester and if we could ride with him and pay for half of the rental car. He agreed, so we set off for Rochester with our new friend Kyle. After an hour and a half trip in a monsoon-like rainstorm, we finally arrived at the hotel at 2 am.
Keep in mind, reader(s), that I had been asked to fast before my Mayo appointment, so I hadn't been able to eat anything since 7 pm. Needless to say, I was not in an awesome mood.
I got about three hours of sleep and then we headed to Mayo Clinic. Oh my golly, it is huge. And fancy. And full of people. Everything was very well organized, even though we did have to wait a long time to see my doctor. We didn't get back to the hotel until about noon, and then my mom and I finally got to sleep for awhile.
I'll discuss more details about my Mayo visit in another post tomorrow. I'm scheduled for an ultrasound and afterwards I'll know more about the direction I need to go as far as treatment is concerned. Stay tuned for more Mayo Mishaps and Minnesotan Misadventures, as well as more pointless alliterations.
Hearts, stars, and horseshoes,
RG
Radioactive Girl has arrived in Rochester. Unfortunately, I almost did not arrive at all. Last night's travels got pretty crazy. I'll explain:
My mother and I had tickets on a flight from O'Hare to Rochester that was supposed to leave at 7:30 pm last night. We were waiting at the gate, and at 7 pm, when we were supposed to start boarding, they told us we were going to be delayed another half hour. Okay, fine. Unfortunately, this kept happening every half hour until 9:30. Mom was checking the weather in Rochester and we knew there were some intense storms going on, so we assumed our flight would be delayed for a few hours. However, at 9:30 they told us that it was canceled.
The airport folks were telling everyone that they could switch to the flight leaving for Rochester at 7:40 this morning. My appointment with the Mayo endocrinologist was at 6:45. Via basic subtraction we can see how this is a problem. After berating and begging various O'Hare employees, my mother and I finally managed to get on a 10:30 pm flight to Minneapolis, which is only about an hour and a half north of Rochester.
At the Minneapolis airport we had to rent a car. It was around midnight by then, and there were several people in line ahead of us due to the canceled Rochester flight. My mom decided we should ask the man in front of us if he was going to Rochester and if we could ride with him and pay for half of the rental car. He agreed, so we set off for Rochester with our new friend Kyle. After an hour and a half trip in a monsoon-like rainstorm, we finally arrived at the hotel at 2 am.
Keep in mind, reader(s), that I had been asked to fast before my Mayo appointment, so I hadn't been able to eat anything since 7 pm. Needless to say, I was not in an awesome mood.
I got about three hours of sleep and then we headed to Mayo Clinic. Oh my golly, it is huge. And fancy. And full of people. Everything was very well organized, even though we did have to wait a long time to see my doctor. We didn't get back to the hotel until about noon, and then my mom and I finally got to sleep for awhile.
I'll discuss more details about my Mayo visit in another post tomorrow. I'm scheduled for an ultrasound and afterwards I'll know more about the direction I need to go as far as treatment is concerned. Stay tuned for more Mayo Mishaps and Minnesotan Misadventures, as well as more pointless alliterations.
Hearts, stars, and horseshoes,
RG
9/08/2010
Higher Education
Dear reader(s):
Apologies for the lack of updates lately. I have two excuses:
1. I am super crazy busy. Two jobs is two too many.
2. There isn't much to report. Mostly because all my time is spent at my two jobs and no one wants to hear what goes on at my jobs because it is boring. I could tell you, reader(s), about the nine and a half avocados I cut up last night during the salad rush, but do you care? No. I wouldn't care either if I didn't still smell like avocado.
Anyway, I thought I'd post since tonight is my first class as a graduate student, and being in a writing program makes me feel guilty for having neglected to write in this blog. Wish me luck and a sympathetic professor!
The only thing to report cancer-wise is that we set the date with Mayo Clinic. My appointment is the 23rd. And also I now have cancer patient street cred because I'm a Mayo patient. So anyone who didn't previously think my cancer was legit better quit frontin', yo. I'm for realz now, beeyotches.
Okay, class time now. More updates as I have more free time (yeah right).
Under-educated and overworked,
RG
Apologies for the lack of updates lately. I have two excuses:
1. I am super crazy busy. Two jobs is two too many.
2. There isn't much to report. Mostly because all my time is spent at my two jobs and no one wants to hear what goes on at my jobs because it is boring. I could tell you, reader(s), about the nine and a half avocados I cut up last night during the salad rush, but do you care? No. I wouldn't care either if I didn't still smell like avocado.
Anyway, I thought I'd post since tonight is my first class as a graduate student, and being in a writing program makes me feel guilty for having neglected to write in this blog. Wish me luck and a sympathetic professor!
The only thing to report cancer-wise is that we set the date with Mayo Clinic. My appointment is the 23rd. And also I now have cancer patient street cred because I'm a Mayo patient. So anyone who didn't previously think my cancer was legit better quit frontin', yo. I'm for realz now, beeyotches.
Okay, class time now. More updates as I have more free time (yeah right).
Under-educated and overworked,
RG
8/25/2010
ZOMG CHOCOLATE.
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
I JUST ATE CHOCOLATE.
I have achieved religious enlightenment. Please refer to me as "the Bodhisattva" from now on. Thank you.
In Nirvana,
RG
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
7/23/2010
Public Displays of Rudeness
Dear reader(s):
First, an announcement: the dates have been set! My isolation is to take place between August 12th and 19th. Stupid LID diet starts next Thursday, the 29th, and I am currently in the process of eating every delicious iodine-filled thing I can find in preparation for food hell. I will be blogging extensively during my period of solitary confinement - possibly video blogging as well now that I have an awesome new laptop with a built-in webcam - so tune in in August for my super-thrilling words of boredom and woe.
And now, on to the topic I will be ranting about today: public reactions to my thyroidectomy scar.
Lots of cancer patients have to deal with looking different after treatment - usually the main changes are hair loss from chemo and/or chest alterations from a mastectomy. Luckily for me, my type of cancer (thyroid) involves a treatment that doesn't usually cause hair loss; plus I got to keep my awesome boobs. Unluckily, the thyroid surgery left a pretty visible scar on my neck, and mine hasn't been healing well so it's particularly noticeable. Normally that doesn't bother me - I've had it for a long time and I've accepted the way I look now - but every so often I get asked about it by a total stranger. Usually the stranger is a child, and so usually I don't mind. I know kids don't have much of a verbal filter. But today I was taking the subway (to a job interview) and had a total stranger - an adult stranger - ask me: "What happened to your neck?".
I didn't know this person, and it was none of his business what happened to my neck or any other part of me. Occasionally I will get this question at a party too, after a couple of drinks have been had, or at a bar. What I really don't understand is why I anyone thinks it's acceptable to ask me this question at all. For all they know I could've been attacked by an ex-husband with a knife, or mugged, or had some equally horrible emotional trauma. In fact, having cancer WAS a pretty emotionally traumatizing experience, and the last place I want to rehash it is somewhere crowded or public. Basic common sense would suggest to anyone who meets me that having my neck cut open is likely to have been unpleasant, so why would anyone in their right mind think that I would enjoy discussing it again - especially if I'm just trying to have a drink with my girlfriends at a bar or minding my own business on the stupid train? Would these people ask someone with a scarf around their head how they lost their hair? Or say to a woman whose shirt didn't quite fit right: "Hey, where's your other boob?". Possibly yes - I'm sure that level of social ineptitude exists - but I doubt it.
So what is it, reader(s), about a roughly three-inch long, slightly hypertrophic scar that causes people to, as my roommate would say, "spontaneously combust into douchebaggery"? (That phrase is pending copyright, by the way.) I understand that it is located right between my perfect face and rockin' tits, and given that most of these aforementioned douchebags are male it would follow that its location tends to draw the eye. But if it is really so distracting that one feels the need to completely discard manners (not to mention my feelings) and verbally acknowledge it, then why not simply look either up or down instead? Honestly, I'd rather a creepy jerk stare at my chest than pry into my personal life. Either way you're a creepy jerk and have no chance of any further interaction with me, but at least the first choice means I don't have to talk to you.
Before I met my boyfriend, nearly every boy I met at a party who showed any interest in me eventually worked up a high enough blood alcohol content to ask about my scar. My boyfriend was the only one who didn't. That's probably why he won out, and why he's been the only man who has the gonads to stick it out through all the cancer crap. I think I deserve to be seen as a person, not a disease - or a scar - and it has been shockingly disheartening to discover how many people lack the emotional and/or intellectual capacity to do so.
So in preparation for future encounters with such people, I think I need to come up with a better answer to the "What happened to your neck?" question. Normally I just mumble something about a surgery, but maybe it's best just to fight rudeness with rudeness. Which response, dear reader(s), do you think would be most uncomfortable for the asker:
1) Look them straight in the eye and say, "I have cancer." Maintain eye contact. Look very serious and/or sad. Possibly learn how to fake crying.
2) Make up a long and obviously untrue story, possibly involving ninjas, and then walk away.
3) Same as above, but with a story that seems like it could be true and suggests that I am or was a prostitute or gang member.
4) Ask them what happened to their face/brain/manners.
5) Burst into tears. This would also require learning how to cry at will.
6) Play dead.
7) All of the above. One after the other. Very quickly.
If no one comments on this I'm choosing number 7. You have been warned. Also I'd love to hear stories from people who have had similar problems with scars, post-chemo baldness, or any other physical abnormality. Remember: only YOU can prevent spontaneous douchebaggery (COPYRIGHT PENDING).
Yours,
RG
First, an announcement: the dates have been set! My isolation is to take place between August 12th and 19th. Stupid LID diet starts next Thursday, the 29th, and I am currently in the process of eating every delicious iodine-filled thing I can find in preparation for food hell. I will be blogging extensively during my period of solitary confinement - possibly video blogging as well now that I have an awesome new laptop with a built-in webcam - so tune in in August for my super-thrilling words of boredom and woe.
And now, on to the topic I will be ranting about today: public reactions to my thyroidectomy scar.
Lots of cancer patients have to deal with looking different after treatment - usually the main changes are hair loss from chemo and/or chest alterations from a mastectomy. Luckily for me, my type of cancer (thyroid) involves a treatment that doesn't usually cause hair loss; plus I got to keep my awesome boobs. Unluckily, the thyroid surgery left a pretty visible scar on my neck, and mine hasn't been healing well so it's particularly noticeable. Normally that doesn't bother me - I've had it for a long time and I've accepted the way I look now - but every so often I get asked about it by a total stranger. Usually the stranger is a child, and so usually I don't mind. I know kids don't have much of a verbal filter. But today I was taking the subway (to a job interview) and had a total stranger - an adult stranger - ask me: "What happened to your neck?".
I didn't know this person, and it was none of his business what happened to my neck or any other part of me. Occasionally I will get this question at a party too, after a couple of drinks have been had, or at a bar. What I really don't understand is why I anyone thinks it's acceptable to ask me this question at all. For all they know I could've been attacked by an ex-husband with a knife, or mugged, or had some equally horrible emotional trauma. In fact, having cancer WAS a pretty emotionally traumatizing experience, and the last place I want to rehash it is somewhere crowded or public. Basic common sense would suggest to anyone who meets me that having my neck cut open is likely to have been unpleasant, so why would anyone in their right mind think that I would enjoy discussing it again - especially if I'm just trying to have a drink with my girlfriends at a bar or minding my own business on the stupid train? Would these people ask someone with a scarf around their head how they lost their hair? Or say to a woman whose shirt didn't quite fit right: "Hey, where's your other boob?". Possibly yes - I'm sure that level of social ineptitude exists - but I doubt it.
So what is it, reader(s), about a roughly three-inch long, slightly hypertrophic scar that causes people to, as my roommate would say, "spontaneously combust into douchebaggery"? (That phrase is pending copyright, by the way.) I understand that it is located right between my perfect face and rockin' tits, and given that most of these aforementioned douchebags are male it would follow that its location tends to draw the eye. But if it is really so distracting that one feels the need to completely discard manners (not to mention my feelings) and verbally acknowledge it, then why not simply look either up or down instead? Honestly, I'd rather a creepy jerk stare at my chest than pry into my personal life. Either way you're a creepy jerk and have no chance of any further interaction with me, but at least the first choice means I don't have to talk to you.
Before I met my boyfriend, nearly every boy I met at a party who showed any interest in me eventually worked up a high enough blood alcohol content to ask about my scar. My boyfriend was the only one who didn't. That's probably why he won out, and why he's been the only man who has the gonads to stick it out through all the cancer crap. I think I deserve to be seen as a person, not a disease - or a scar - and it has been shockingly disheartening to discover how many people lack the emotional and/or intellectual capacity to do so.
So in preparation for future encounters with such people, I think I need to come up with a better answer to the "What happened to your neck?" question. Normally I just mumble something about a surgery, but maybe it's best just to fight rudeness with rudeness. Which response, dear reader(s), do you think would be most uncomfortable for the asker:
1) Look them straight in the eye and say, "I have cancer." Maintain eye contact. Look very serious and/or sad. Possibly learn how to fake crying.
2) Make up a long and obviously untrue story, possibly involving ninjas, and then walk away.
3) Same as above, but with a story that seems like it could be true and suggests that I am or was a prostitute or gang member.
4) Ask them what happened to their face/brain/manners.
5) Burst into tears. This would also require learning how to cry at will.
6) Play dead.
7) All of the above. One after the other. Very quickly.
If no one comments on this I'm choosing number 7. You have been warned. Also I'd love to hear stories from people who have had similar problems with scars, post-chemo baldness, or any other physical abnormality. Remember: only YOU can prevent spontaneous douchebaggery (COPYRIGHT PENDING).
Yours,
RG
5/12/2010
You want some exposition? You got it.
Dear reader(s?):
I'm sure you all want to know what the point of this blog is. Well, there's a short version and a long version.
The Short Version:
Diagnosed with papillary thyroid cancer October 2008, middle of junior year of college. Surgery. Crazy treatment involving radioactive iodine - basically went on a lame diet for a long time AND off hormone meds, then swallowed a radioactive pill and couldn't go near living creatures for 5-7 days. Then, remission for about two seconds. December 09, routine scan went bad. March 2010, cancer again! More surgery in April. Now a summer of crazy radioactive iodine treatment! Again! This time decided to blog about it, mostly because last time I was really really bored. And I like to write. And I also like to talk about myself.
The Long Version:
...really? You want the long version? Okay, here, how about just a list of FAQs about my condition, and if anyone wants to know anything else you can leave it in the comments. K?
What is papillary thyroid cancer?
Well, everyone knows what cancer is. Papillary is the most common type of cancer that occurs in the thyroid. A thyroid is a little butterfly-shaped gland in the front of your neck that controls your hormone production, especially metabolism (a lot of overweight or underweight people have thyroid problems). Papillary thyroid cancer is actually quite treatable in most cases - five year survival rates are generally above 95 percent, especially in young people. So no, I am not going to die. At least not from thyroid cancer. At least not anytime soon.
How did you get it? Did you have any symptoms?
No idea. The surgeon who removed my thyroid said he thought I might've had a condition called Hashimoto's Disease which causes the thyroid gland to overproduce hormones and simply never noticed it. Apparently some doctors think that Hashimoto's can lead to thyroid cancer. Still no official cause, though. And I never had any symptoms beforehand. I was on my way to a class one afternoon when I noticed in the mirror that my neck was shaped wrong - there was a huge lump on the left side that hadn't been there the day before. I went to the school wellness center, and was told things like "it can't possibly have grown that fast, it must have been there for months without you noticing it", "you're the medical mystery of the day!", and "it's probably not cancer". A few weeks later...mystery solved.
Wait - they removed your thyroid gland? All of it? Can you live without one?
Obviously I'm still alive, so I think that answers the last question (and yes, people have asked me that). Thyroid surgeries are actually quite common, as are thyroid problems, especially in women. People with thyroid problems usually take hormone-replacement drugs to correct imbalances, and people like me can live just fine on thyroid-replacement medication. When my dose is right I actually feel better than I did before. But getting the right dose is tricky and usually takes a year or two, plus I have to be on overdose when the docs think I still have cancer because it keeps thyroid cells from reproducing. So most of the time I feel like crap.
WTF is radioactive iodine?
Most cancer patients get chemo and/or radiation - thyca (that's our cute little nickname for thyroid cancer) patients get radioactive iodine treatments. Radioactive iodine, as some of my doctors have put it, is kind of a "silver bullet" for thyroid cancer. Because treating cancer is like killing werewolves, only not as cool. Anyway, the basic point as I understand it is that thyroid cells drink in iodine to function, so to get rid of cancerous thyroid cells they "starve" them of iodine for a long time - which means a low-iodine diet and no hormone meds - and then give them a huge radioactive dose of iodine to "ablate" them (blow them up). If you've ever seen a cartoon where the monster is killed by feeding it so much food that it explodes - it's like that. Only on a microsopic scale. And not as cool.
So it's not chemo?
Technically, as I was told by nuclear medicine doctor, it is a form of specialized, targeted chemo. As far as I understand (let's all keep in mind that I have no medical training whatsoever) chemotherapy basically means a treatment for cancer that involves using chemicals to kill a large number of cells in the area with the cancer, both healthy and unhealthy. Radioiodine falls under that category. Sometimes I refer to it as chemo in conversations because it's easier to say and understand than "radioactive iodine" or "nuclear medicine treatment", etc. But no, it doesn't make your hair fall out, and usually there's no vomiting involved.
But you can live without your medicine for that long?
If you can call it living. For about 4-6 weeks, yes. If I were to not take them at all for...maybe 2-3 months or more, I would eventually die. Again, this is according to one of my doct ors. But being off meds for a long time is pretty miserable. Being low on thyroid hormones causes a person to become what is known as "hypothryoid" - we cancer patients call it "going hypo". Side effects of hypothryoidism include extreme tiredness, extreme depression, extreme coldness, and being an extreme bitch to one's loved ones.
What does a low-iodine diet consist of?
Hardtack and gruel. Nuts and berries. Crap. It's complicated, but the three major categories of foods to avoid are salt, dairy, and seafood. Guess what has salt and dairy in it? Pretty much everything you can find at any grocery store. Mostly I eat fresh fruits and vegetables, whatever meat I can find that hasn't had any preservatives added (this usually involves specialty butchers), kosher foods, and rare salt-free versions of things to which I add kosher salt (the only kind of salt allowed). Oh, and if I can find a breadmaker I can make my own bread. But seriously, it pretty much is nuts and berries, because I can't cook. At all.
Does it usually come back?
Nope. Based on estimates from various doctors, there was a 3-10% chance of my cancer recurring. I'm just lucky.
Who the hell are you, anyway?
Oh, right! Me! This is my favorite topic! Uh, for starters, I'm 22 years old, about to graduate from college with two bachelor's degrees in English and Theatre. I live in the big city. Currently I'm trying to find summer work to pay for grad school in the fall and taking the last class I need to finish up all my core credits for undergrad. I'm enrolled in a masters program in Writing and Publishing, and no I don't know what I want to do with my life. Right now my goals pretty much consist of getting through cancer treatment and paying my rent. Unfortunately those are not mutually exclusive.
Other questions??
Leave a comment. If you want more info about thyroid cancer, thyca.org is a really great resource. Thyroid cancer is rare and doesn't get a lot of press, but it's one of the most common cancers in college students like me and instances of thyroid cancer are growing rapidly, so it's important to check your neck for lumps. And that's all the stereotypical cancer patient stuff I'm going to say for now.
Yours,
Radioactive Girl
I'm sure you all want to know what the point of this blog is. Well, there's a short version and a long version.
The Short Version:
Diagnosed with papillary thyroid cancer October 2008, middle of junior year of college. Surgery. Crazy treatment involving radioactive iodine - basically went on a lame diet for a long time AND off hormone meds, then swallowed a radioactive pill and couldn't go near living creatures for 5-7 days. Then, remission for about two seconds. December 09, routine scan went bad. March 2010, cancer again! More surgery in April. Now a summer of crazy radioactive iodine treatment! Again! This time decided to blog about it, mostly because last time I was really really bored. And I like to write. And I also like to talk about myself.
The Long Version:
...really? You want the long version? Okay, here, how about just a list of FAQs about my condition, and if anyone wants to know anything else you can leave it in the comments. K?
What is papillary thyroid cancer?
Well, everyone knows what cancer is. Papillary is the most common type of cancer that occurs in the thyroid. A thyroid is a little butterfly-shaped gland in the front of your neck that controls your hormone production, especially metabolism (a lot of overweight or underweight people have thyroid problems). Papillary thyroid cancer is actually quite treatable in most cases - five year survival rates are generally above 95 percent, especially in young people. So no, I am not going to die. At least not from thyroid cancer. At least not anytime soon.
How did you get it? Did you have any symptoms?
No idea. The surgeon who removed my thyroid said he thought I might've had a condition called Hashimoto's Disease which causes the thyroid gland to overproduce hormones and simply never noticed it. Apparently some doctors think that Hashimoto's can lead to thyroid cancer. Still no official cause, though. And I never had any symptoms beforehand. I was on my way to a class one afternoon when I noticed in the mirror that my neck was shaped wrong - there was a huge lump on the left side that hadn't been there the day before. I went to the school wellness center, and was told things like "it can't possibly have grown that fast, it must have been there for months without you noticing it", "you're the medical mystery of the day!", and "it's probably not cancer". A few weeks later...mystery solved.
Wait - they removed your thyroid gland? All of it? Can you live without one?
Obviously I'm still alive, so I think that answers the last question (and yes, people have asked me that). Thyroid surgeries are actually quite common, as are thyroid problems, especially in women. People with thyroid problems usually take hormone-replacement drugs to correct imbalances, and people like me can live just fine on thyroid-replacement medication. When my dose is right I actually feel better than I did before. But getting the right dose is tricky and usually takes a year or two, plus I have to be on overdose when the docs think I still have cancer because it keeps thyroid cells from reproducing. So most of the time I feel like crap.
WTF is radioactive iodine?
Most cancer patients get chemo and/or radiation - thyca (that's our cute little nickname for thyroid cancer) patients get radioactive iodine treatments. Radioactive iodine, as some of my doctors have put it, is kind of a "silver bullet" for thyroid cancer. Because treating cancer is like killing werewolves, only not as cool. Anyway, the basic point as I understand it is that thyroid cells drink in iodine to function, so to get rid of cancerous thyroid cells they "starve" them of iodine for a long time - which means a low-iodine diet and no hormone meds - and then give them a huge radioactive dose of iodine to "ablate" them (blow them up). If you've ever seen a cartoon where the monster is killed by feeding it so much food that it explodes - it's like that. Only on a microsopic scale. And not as cool.
So it's not chemo?
Technically, as I was told by nuclear medicine doctor, it is a form of specialized, targeted chemo. As far as I understand (let's all keep in mind that I have no medical training whatsoever) chemotherapy basically means a treatment for cancer that involves using chemicals to kill a large number of cells in the area with the cancer, both healthy and unhealthy. Radioiodine falls under that category. Sometimes I refer to it as chemo in conversations because it's easier to say and understand than "radioactive iodine" or "nuclear medicine treatment", etc. But no, it doesn't make your hair fall out, and usually there's no vomiting involved.
But you can live without your medicine for that long?
What does a low-iodine diet consist of?
Does it usually come back?
Nope. Based on estimates from various doctors, there was a 3-10% chance of my cancer recurring. I'm just lucky.
Who the hell are you, anyway?
Oh, right! Me! This is my favorite topic! Uh, for starters, I'm 22 years old, about to graduate from college with two bachelor's degrees in English and Theatre. I live in the big city. Currently I'm trying to find summer work to pay for grad school in the fall and taking the last class I need to finish up all my core credits for undergrad. I'm enrolled in a masters program in Writing and Publishing, and no I don't know what I want to do with my life. Right now my goals pretty much consist of getting through cancer treatment and paying my rent. Unfortunately those are not mutually exclusive.
Other questions??
Leave a comment. If you want more info about thyroid cancer, thyca.org is a really great resource. Thyroid cancer is rare and doesn't get a lot of press, but it's one of the most common cancers in college students like me and instances of thyroid cancer are growing rapidly, so it's important to check your neck for lumps. And that's all the stereotypical cancer patient stuff I'm going to say for now.
Yours,
Radioactive Girl
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