we do a dance number to a song called, i will assume," that zumba makes me crazy". actually, that zumba keeps me from going crazy. if i had only known that regular exercise, rather cardio-ish, could make me feel so good, i would have started this years ago. oh, i have always walked. there are lots of places to walk/hike around where i live. when my children were young, though, the walk went something like this: walk two feet, pick up a stick. walk two more feet, discard stick( or give it to mom) and pick up a precious rock. we made a turtle look speedy. and i have never been into " power walking". not that i am poking fun- whatever makes you happy exercise wise, is good.
love those endorphins, love those zumba belly scarves, the music, the dancing! who cares if the person right behind me is 25 years younger than me, wears a sports bra and pants that barely cover her, well, parts. as i have said before, enthusiasm goes a long way. besides, the woman in front of me has about 20 years on me and she can do a pretty good booty circle, by the way. whatever exercise that you choose, it can only help- especially those of us with thyroid disorders. it improves mood( my husband is cheering now) helps us with our weight issues( i won't go there) and for me, has helped me get my strength back. i mentioned this in one of my first blogs, but right after my surgery/I-131 i did not have enough strength to pick up my dogs water bowl! that was a turning point for me- hey, they were thirsty- and i decided that i needed to fix things. i have my daughter to thank for encouraging me to go to a live zumba class. the dvds are good at first- just so you do not look so much like a deer in the headlights at your first live class. but, really, being in a class with other people is so much more fun. even if we do occasionally do the texas two step, or whatever that was.
this is week two on my LID. i prepared better, food wise, this time. so, i have lost some weight, but not as much as i had imagined. o.k. hoped. i have lost about 5 pounds so far- not too bad. i have only been really, really hungry a couple of times. unsalted, brown rice cakes to the rescue- yeah. i have been sort of on a roller coaster, emotionally,though. i have been angry at times( when is the testing going to end?) and at times sad( what if something is wrong?) i try just to go on with my new normal life, but i can not help but be a little anxious about the test. my doctor said that she would wait until all the test results are back before she calls me with any results. the blood work takes the longest time to get back- about ten days or so. then she is supposed to call me. as you may know, she called me at work to tell me i had cancer. i had to go home of course.i am sure that i will be at work this time,too.hopefully, i will not have to go home this time.
just so you know, last week we had a substitute instructor for our zumba class. my daughter and i did not get to save a horse, but maybe when she visits at the end of august, we can.
I'm writing about my journey through thyroid cancer and beyond. I'm going to try to incorporate humor and positive self-reflection in an attempt to help myself heal and perhaps help others deal with this situation.Disclaimer: this site is for informational purposes only. this is not a substitute for seeing your health care provider. I am not responsible for any injury,loss or damage that allegedly arises from any information i publish in my blog.
Tuesday, July 26, 2011
Wednesday, July 20, 2011
"and i saddled up my horse, and i ride into the city. i make a lot of noise,cause the girls they are so pretty. riding up and down broadway on my old stud leroy, and the girls say : save a horse, ride a cowboy. what? what? save a horse, ride a cowboy" Save a horse, ride a cowboy, by big and rich
it is DAY THREE on my LID, and no, i have not lost my mind(yet). last year at this time, i was recovering from my treatment dose of the I-131. i was isolated in my house- pacing around upstairs like a tragic figure in some novel. anyway, i was not sure if i would have the energy, while i am on the LID, to go to zumba class. i decided to give it a try. i told my friend that if i passed out, she should just kick me to the side and zumba on!
the class started out very well. we did my favorite warm up number, and then- SALSA!! yeah! i own that song. what i lack in skill, i make up for in enthusiasm. anyway, before too long, i thought that i heard a different kind of song coming from the instructors i-pod. oh,no, it was a country western song. my friend told me,"uh, bea, you might want to close your mouth now, i think i saw a fly in here."
our zumba area is right in the middle of a big room, with only a waist high glass block wall surrounding our area. outside of that is the track, as well as an area filled with treadmills, rowing machines, etc. a lot of people use the track as well as the exercise equipment. it was pretty busy tonight, but when we got to the chorus of that song,the rowing machines and treadmills stopped. the ( rather elderly) men walking around the track stopped,too. i think that the moves we did to the " save a horse, ride a cowboy" part of the song are illegal in a few states. we also, to make matters worse, sang those lyrics. rather loudly, i should say. i would also have to say that our zumba class has not caused such a stir since we did the whole "thriller" routine last october. our instructor sure keeps things interesting.
i was glad that i could do zumba, and so far, my normal activities while on a pretty limited diet. i keep a pack of unsalted, brown rice cakes at work- just in case i get light headed or something. i sure do not have to worry about any of my coworkers eating them. in fact, one of the guys i work with snickers every time i crunch into one. he says, " oh, are those gooooooood??" haha. i asked him if he wanted any, but so far it is a no go.
i have also made a discovery- well i will know for sure by the end of the diet. i think that i may just be ( horror of horrors) lactose intolerant! my stomach has not hurt since i have eliminated dairy from my diet. oh, well, maybe after i get off this diet, i will save dairy for the week-ends i am off or something. i was hoping that it was another food- maybe wheat- that was bothering me, but it seems to be the dairy. just what i needed- more dietary restrictions.
in the mean time, i am planning to go back to zumba on saturday. my daughter will be visiting, and we are going to the class together. i just can not wait to see the look on my daughters face if the instructor plays "save a horse, ride a cowboy." i am just not sure if the two of us can keep a straight face while doing the routine. we will be following the first and only rule of zumba though, and that is to have fun!
the class started out very well. we did my favorite warm up number, and then- SALSA!! yeah! i own that song. what i lack in skill, i make up for in enthusiasm. anyway, before too long, i thought that i heard a different kind of song coming from the instructors i-pod. oh,no, it was a country western song. my friend told me,"uh, bea, you might want to close your mouth now, i think i saw a fly in here."
our zumba area is right in the middle of a big room, with only a waist high glass block wall surrounding our area. outside of that is the track, as well as an area filled with treadmills, rowing machines, etc. a lot of people use the track as well as the exercise equipment. it was pretty busy tonight, but when we got to the chorus of that song,the rowing machines and treadmills stopped. the ( rather elderly) men walking around the track stopped,too. i think that the moves we did to the " save a horse, ride a cowboy" part of the song are illegal in a few states. we also, to make matters worse, sang those lyrics. rather loudly, i should say. i would also have to say that our zumba class has not caused such a stir since we did the whole "thriller" routine last october. our instructor sure keeps things interesting.
i was glad that i could do zumba, and so far, my normal activities while on a pretty limited diet. i keep a pack of unsalted, brown rice cakes at work- just in case i get light headed or something. i sure do not have to worry about any of my coworkers eating them. in fact, one of the guys i work with snickers every time i crunch into one. he says, " oh, are those gooooooood??" haha. i asked him if he wanted any, but so far it is a no go.
i have also made a discovery- well i will know for sure by the end of the diet. i think that i may just be ( horror of horrors) lactose intolerant! my stomach has not hurt since i have eliminated dairy from my diet. oh, well, maybe after i get off this diet, i will save dairy for the week-ends i am off or something. i was hoping that it was another food- maybe wheat- that was bothering me, but it seems to be the dairy. just what i needed- more dietary restrictions.
in the mean time, i am planning to go back to zumba on saturday. my daughter will be visiting, and we are going to the class together. i just can not wait to see the look on my daughters face if the instructor plays "save a horse, ride a cowboy." i am just not sure if the two of us can keep a straight face while doing the routine. we will be following the first and only rule of zumba though, and that is to have fun!
Monday, July 18, 2011
my first day on the LID.....
yesterday, i got out my trusty book, "the low iodine diet cookbook", by Norene Gilletz and decided to re-read it before i began the diet. i have mentioned the "why it is important" facts in some of my blogs, but i have not mentioned anything about the history of the diet. in the book, there is a forward by Dr. Kenneth Ain, who is director of the thyroid oncology program at the university of Kentucky. one chilling fact that i re-read in the book is that thyroid cancer can not currently be treated with traditional chemotherapy. so, i think patients should be diligent in understanding the importance of the LID, both in treatment with the I-131 and before full body scans.
for over 50 years doctors have been using radioactive iodine to treat thyroid cancer. while they recognized the importance of a low dietary iodine diet, there was much disagreement as to what a LID should be. so, in 1988, the NIH ( national institutes of health) located in bethesda, maryland, came up with a simple diet that was proven to be effective. dr. ain learned about this diet, and has made only a few changes in the past few years. the LID was unknown to most physicians,though, as late as the late 1990s. in 1997, dr. ain was invited to speak at a thyca conference, and since then, with thyca's help, the word has gotten out to doctors as well as thyroid cancer patients. ( footnote here: in case you are not aware, thyca is a website for thyroid cancer patients. they also have regional meetings, as well as sponsoring local thyca meetings which are organized by (usually) other thyroid cancer survivors.) if you have not checked out this website, please do. they offer wonderful information and support.
norene gilletz is a renowned cookbook author, and has used the NIH guidelines in composing a cookbook that is informative, as well as indispensable. i personally could not be on the LID with any degree of confidence without this cookbook! whatever source you use,though, i would make sure that it follows the NIH guidelines. even a small mistake can wreck the diet.
so, yesterday, i spent a large part of my day cooking. i needed to be prepared for the next two weeks on the LID. i made coleslaw, blueberry muffins, baked chicken, and homemade bread. i have stocked up on fresh fruits and vegetables. i complain about this diet, but really, i think that it is probably what we should be following all of the time. i really, really, miss chocolate and dairy! but i probably need to eat less of them- i know it would be healthier for me. one thing that i had to get,though, i am not so fond of. and that is unsalted( you can add your own non-iodized salt later, but no sea salt or iodized salt, of course) brown rice cakes. they are a snack for me- especially when i am at work and need a little energy to get through my shift. they have hardly any flavor, but are filling- the way styrofoam would be i think. anyway, they are a necessary evil for me, and one that i WILL NOT be going back to after the diet!
knowing a little bit about the diet- how it came about, why it is so important that we follow it just as closely as possible, helps a little i think. for anyone who will be on the LID now, or in the future, i recommend buying the cookbook. of course, you can go to the thyca website and see it there. but personally, i like to have a cookbook in hand. i enjoy cooking, and this makes it a little easier for me. i will let everyone know how i am doing, and good luck to those of you who may be on the LID with me.
for over 50 years doctors have been using radioactive iodine to treat thyroid cancer. while they recognized the importance of a low dietary iodine diet, there was much disagreement as to what a LID should be. so, in 1988, the NIH ( national institutes of health) located in bethesda, maryland, came up with a simple diet that was proven to be effective. dr. ain learned about this diet, and has made only a few changes in the past few years. the LID was unknown to most physicians,though, as late as the late 1990s. in 1997, dr. ain was invited to speak at a thyca conference, and since then, with thyca's help, the word has gotten out to doctors as well as thyroid cancer patients. ( footnote here: in case you are not aware, thyca is a website for thyroid cancer patients. they also have regional meetings, as well as sponsoring local thyca meetings which are organized by (usually) other thyroid cancer survivors.) if you have not checked out this website, please do. they offer wonderful information and support.
norene gilletz is a renowned cookbook author, and has used the NIH guidelines in composing a cookbook that is informative, as well as indispensable. i personally could not be on the LID with any degree of confidence without this cookbook! whatever source you use,though, i would make sure that it follows the NIH guidelines. even a small mistake can wreck the diet.
so, yesterday, i spent a large part of my day cooking. i needed to be prepared for the next two weeks on the LID. i made coleslaw, blueberry muffins, baked chicken, and homemade bread. i have stocked up on fresh fruits and vegetables. i complain about this diet, but really, i think that it is probably what we should be following all of the time. i really, really, miss chocolate and dairy! but i probably need to eat less of them- i know it would be healthier for me. one thing that i had to get,though, i am not so fond of. and that is unsalted( you can add your own non-iodized salt later, but no sea salt or iodized salt, of course) brown rice cakes. they are a snack for me- especially when i am at work and need a little energy to get through my shift. they have hardly any flavor, but are filling- the way styrofoam would be i think. anyway, they are a necessary evil for me, and one that i WILL NOT be going back to after the diet!
knowing a little bit about the diet- how it came about, why it is so important that we follow it just as closely as possible, helps a little i think. for anyone who will be on the LID now, or in the future, i recommend buying the cookbook. of course, you can go to the thyca website and see it there. but personally, i like to have a cookbook in hand. i enjoy cooking, and this makes it a little easier for me. i will let everyone know how i am doing, and good luck to those of you who may be on the LID with me.
Tuesday, July 12, 2011
T-minus nineteen days and counting!!
well it is done. i have cut my endo from duke loose, due the whole sulfite negotiation, or should i say non-negotiation, and my old endo faxed my orders for the thyrogen, scan, and blood work to the hospital near me. i am on the schedule for august 1st, just as i had hoped. i start on the dreaded LID on monday, july 18th. i am sort of dreading it, but hey, it could be worse. i could be going to the endo at duke who made you be on the diet for 4 weeks, not two. instead of the 20 pounds i had hoped i would lose on the LID, perhaps i can lose ten. i would be soooooooooooo happy with that! i have managed to hold my weight steady since last year, but i really would like to lose about 20 pounds. i do not have to tell you guys how hard it is to lose weight without your thyroid. who knew that the little guy could be such a tyrant? he calls the shots for your whole body it seems. even the best thyroid supplement is not quite the same as a well behaved thyroid gland. sometimes i still miss mine. even though, as i said, before my surgery i had the worst case of thyroiditis that i have ever had! and every time that i passed a mirror, i would look at my neck and say" wow, it does not look like there is a monster in there, but there is!"
i need to get a new profile picture- one that shows off my neck. i wish that i had a before and after picture. i would have liked to post them, so that people would know that they are not going to look like the bride of frankenstein forever. i wanted my husband to take a picture right after my surgery, but he did not want to. it is, of course, a world of difference. people tell me that if they did not know that i had surgery, they could not tell from looking at my neck. the surgeon made the incision along the "natural crease of my neck" so it is pretty hard to tell. i, of course, see it plainly. especially if i am swallowing, or if turn my neck a certain way. i am not complaining,though! honestly, i was not worried about the scar. i do have a very public job, but i just wanted the cancer gone, and my husband did say " for better or worse " so there you go.
i guess it is natural, but i am a little worried about my upcoming scan. i have confidence in the hospital, that they will do a good job,but i am a little worried about the "reveal" show scheduled for about 10 days or so from my test. my doctor has to wait for the blood test- which is done on friday of my testing- to get back before she will call me with all of the results. it makes my palms sweat just thinking about it! i will probably be at work when she calls ( as i was last time, when she called to tell me i had cancer). lets hope this time the news will not make me have to go home.
as for this week, i am eating pretty much every thing that i want! i have made cupcakes, cookies, and a lemonade pie so far! don't worry, i am sharing this with my co-workers and family. i just need to tank up a bit before my LID! the no dairy products was the hardest part of the LID for me. as i said before, i probably eat too much dairy, if i miss it that much. yesterday i went grocery shopping and bought some more unsalted, brown rice cakes. styrofoam, anyone??? i am sure that they taste the same! one tip though: the brown rice ones taste a bit better than the white rice ones. normally i do not have such a sensitive palate, but trust me on this one!
i need to get a new profile picture- one that shows off my neck. i wish that i had a before and after picture. i would have liked to post them, so that people would know that they are not going to look like the bride of frankenstein forever. i wanted my husband to take a picture right after my surgery, but he did not want to. it is, of course, a world of difference. people tell me that if they did not know that i had surgery, they could not tell from looking at my neck. the surgeon made the incision along the "natural crease of my neck" so it is pretty hard to tell. i, of course, see it plainly. especially if i am swallowing, or if turn my neck a certain way. i am not complaining,though! honestly, i was not worried about the scar. i do have a very public job, but i just wanted the cancer gone, and my husband did say " for better or worse " so there you go.
i guess it is natural, but i am a little worried about my upcoming scan. i have confidence in the hospital, that they will do a good job,but i am a little worried about the "reveal" show scheduled for about 10 days or so from my test. my doctor has to wait for the blood test- which is done on friday of my testing- to get back before she will call me with all of the results. it makes my palms sweat just thinking about it! i will probably be at work when she calls ( as i was last time, when she called to tell me i had cancer). lets hope this time the news will not make me have to go home.
as for this week, i am eating pretty much every thing that i want! i have made cupcakes, cookies, and a lemonade pie so far! don't worry, i am sharing this with my co-workers and family. i just need to tank up a bit before my LID! the no dairy products was the hardest part of the LID for me. as i said before, i probably eat too much dairy, if i miss it that much. yesterday i went grocery shopping and bought some more unsalted, brown rice cakes. styrofoam, anyone??? i am sure that they taste the same! one tip though: the brown rice ones taste a bit better than the white rice ones. normally i do not have such a sensitive palate, but trust me on this one!
Wednesday, July 6, 2011
"Well, i won't back down, no, i won't back down. You can stand me up at the gates of Hell, but i won't back down. No, i'll stand my ground, won't be pushed around. and i'll keep this world from dragging me down, gonna stand my ground, and i won't back down. well i know what's right, i got just one life. in a world that keeps on pushing me around, but i'll stand my ground. AND I WON'T BACK DOWN! " Won't back down, by Tom Petty
one thing i have learned from having cancer, is that you have to stand up for yourself. i just will not be forced to do something that i am not comfortable with, or do not feel good about. i have been going around and around with my new( soon to be ex) doctor from duke concerning the tracer dose that i have to take before i have my full body scan. the doctor uses I-123 liquid, and not the traditional I-131 capsules. i have had the I-131 treatment dose, as well as a tracer dose in the past and did fine with this. when she mentioned that i would be taking the liquid I-123 i did some research. i found out that it contains sulfite preservatives. i have anaphylactic shock reactions to sulfite preservatives. so i asked her to please change to the I-123 or I-131 capsule instead. sounds simple, right? even though i explained to her that i have been dealing with this allergy for the past seven years, and offered to give her the name of my allergist if she needed further confirmation, she would not change the order!!
this would sort of be like if someone had a peanut allergy- and we all know how bad those are- and someone offered to give them " just a little bit of peanuts". no one knows at what percentage sulfites will cause someone who is sensitive to have a reaction. manufacturers are not required to list these preservatives( there are six chemical names) unless they exceed ten parts per million. concentrations of less than this have triggered reactions in sensitive people.
o.k., i guess i could just take my epinephrine injection and my atarax tablets with me and take the liquid I-123 anyway, but i am not. anaphylactic reactions are just horrible! and when you have one, you never know if it will be your last, if you know what i mean.
i have thought this over ( and over again) and have decided to go to the semi-local hospital for the scan. it is where i got my "chemo" treatment dose of the I-131 and my scan the first time. i like the radiologist( remember the wizard from one of my previous blogs? he caught the mistake in my I-131 dose. he is on my good guy list forever now). i also like the small nature of the hospital, and the fact that i can drive myself to and from the several visits that i have to make for injections, tracer dose of the I-131 CAPSULE, scan, and blood work. it takes all week. my good old endo from raleigh has been kind enough to agree to fax in the orders to this hospital for me. i had not stopped seeing her, thank goodness, and have an ultrasound already scheduled for september.the only part that i regret really, is the accuracy of the blood work. duke sends theirs off to the mayo clinic, and the results are, as i found out, much more accurate. i guess i will just deal with this the best way that i can. there is also a little" hoping for the best" in there, as well.
this has been a hard decision for me, really. but i know it is the best one. i was o.k. with the 4 weeks on the LID diet, although i am not sad that it will now just be two weeks. and FYI, Noreen Gilletz, author of the Low Iodine Diet cookbook, says that there is absolutely no reason to be on the diet for more than 2 weeks. i was willing to compromise on this point, but not on the sulfite issue. i am looking out for myself, and will not agree to do something that i know is going to harm me. as tom succinctly puts it, "well, i know what's right, i got just one life". please do not let anyone try to push you around on a health care issue! as with any good doctor patient relationship, there has to be some compromise and two way discussion. i want a confident doctor, of course, but not one who is unwilling to listen to my concerns and adjust their treatment.
i am waiting on conformation of the scan date. hopefully, it will begin on august 1st. this is a short work week for me, and would not involve as much coverage while i am off to see the wizard, yet again. i have been a little depressed about all of this lately, i will admit. i am feeling better now- now that i feel like i have some control over what is going to happen to me. that and the fact that i wore my new pink belly scarf to zumba tonight- it matched my pink tee-shirt, and i tried my best to shake the coins off. amazing what a little salsa can do for your spirits!
this would sort of be like if someone had a peanut allergy- and we all know how bad those are- and someone offered to give them " just a little bit of peanuts". no one knows at what percentage sulfites will cause someone who is sensitive to have a reaction. manufacturers are not required to list these preservatives( there are six chemical names) unless they exceed ten parts per million. concentrations of less than this have triggered reactions in sensitive people.
o.k., i guess i could just take my epinephrine injection and my atarax tablets with me and take the liquid I-123 anyway, but i am not. anaphylactic reactions are just horrible! and when you have one, you never know if it will be your last, if you know what i mean.
i have thought this over ( and over again) and have decided to go to the semi-local hospital for the scan. it is where i got my "chemo" treatment dose of the I-131 and my scan the first time. i like the radiologist( remember the wizard from one of my previous blogs? he caught the mistake in my I-131 dose. he is on my good guy list forever now). i also like the small nature of the hospital, and the fact that i can drive myself to and from the several visits that i have to make for injections, tracer dose of the I-131 CAPSULE, scan, and blood work. it takes all week. my good old endo from raleigh has been kind enough to agree to fax in the orders to this hospital for me. i had not stopped seeing her, thank goodness, and have an ultrasound already scheduled for september.the only part that i regret really, is the accuracy of the blood work. duke sends theirs off to the mayo clinic, and the results are, as i found out, much more accurate. i guess i will just deal with this the best way that i can. there is also a little" hoping for the best" in there, as well.
this has been a hard decision for me, really. but i know it is the best one. i was o.k. with the 4 weeks on the LID diet, although i am not sad that it will now just be two weeks. and FYI, Noreen Gilletz, author of the Low Iodine Diet cookbook, says that there is absolutely no reason to be on the diet for more than 2 weeks. i was willing to compromise on this point, but not on the sulfite issue. i am looking out for myself, and will not agree to do something that i know is going to harm me. as tom succinctly puts it, "well, i know what's right, i got just one life". please do not let anyone try to push you around on a health care issue! as with any good doctor patient relationship, there has to be some compromise and two way discussion. i want a confident doctor, of course, but not one who is unwilling to listen to my concerns and adjust their treatment.
i am waiting on conformation of the scan date. hopefully, it will begin on august 1st. this is a short work week for me, and would not involve as much coverage while i am off to see the wizard, yet again. i have been a little depressed about all of this lately, i will admit. i am feeling better now- now that i feel like i have some control over what is going to happen to me. that and the fact that i wore my new pink belly scarf to zumba tonight- it matched my pink tee-shirt, and i tried my best to shake the coins off. amazing what a little salsa can do for your spirits!
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