After a long week of low iodine diet, injections, iodine 123, scanning, and blood work...the results are in. The scan was "clear", but the blood work, as my doctor said, was "not ideal". Apparently, some of the tumor marker, thyroglobulin, was detectable. It was such a minute amount, but, my endocrinologist wants to be "aggressive" with watching it. I'm thankful that there isn't a knee jerk reaction to just empirically treat me with another dose of I 131. I really don't want to have to do any more of that stuff, as it can cause a secondary cancer later on. So, the plan is to recheck my level in another 6 months while on my Levoxyl and TSH is suppressed. Hopefully it will remain undetectable on the medication. If so, then a year from now, another ultrasound, Thyrogen injections, low iodine diet, more I 123, scanning, and blood work will probably be the plan again. I was so hopeful for an "all clear" so that we could maybe loosen up on the follow up and just go with ultrasounds and blood work.
Between issues on mammograms and then my thyroid cancer, for the past 3 years, I've been told, "let's recheck in 6 months". I'm tired of my life feeling like it was on hold or in limbo every 6 months. So, as far as I'm concerned, this exam was negative and we're just rechecking blood in 6 months. I can't sit around worrying about it for the next 6 months. It may not have been "ideal", but it wasn't exactly bad news either. So, I'll take what I can get.
Friday, February 19, 2010
Saturday, February 13, 2010
I'm all up in the low iodine
Day 4 of low iodine. The first few days were filled with anger and resentment of having to go through it again. And, by it, I mean the whole process of thinking about, going through special diets, getting injections, going through scans, and waiting again for results as if I were awaiting my sentencing. I am having a harder time dealing with the fact that this didn't end a year ago as I made myself believe. There's still a huge part of me in denial about the fact that I ever had cancer. I prefer to think of it as there was just something wrong with my thyroid. It was removed. End of story. I guess that's human nature. I'm not sure. Either that or just the nature of a nurse, or anyone else in the medical profession who thinks that illness doesn't really apply to them.
Either way, I'm in it again. I'm currently smack in the middle of this 1 week of low iodine. I am once again finding ThyCa an invaluable resource and friend. Today feels like I have accepted it a little better. And, I'm making the necessary adjustments in my life to plan, prepare, & follow through with the diet and the subsequent week of procedures and tests. Soon, it will be over and I'll have a good report and won't have to look forward to this again until a year or maybe (fingers crossed) more.
Either way, I'm in it again. I'm currently smack in the middle of this 1 week of low iodine. I am once again finding ThyCa an invaluable resource and friend. Today feels like I have accepted it a little better. And, I'm making the necessary adjustments in my life to plan, prepare, & follow through with the diet and the subsequent week of procedures and tests. Soon, it will be over and I'll have a good report and won't have to look forward to this again until a year or maybe (fingers crossed) more.
Friday, January 15, 2010
Hel-low-iodine, my old friend (or foe)
It's been a year now since my thyroid was removed. It's been almost as long since I've posted on here. I guess I just sort of thought I was finished.
Today was my 1 year follow up with my endocrinologist to do an ultrasound to see how things look. Last we spoke, six months ago, I remembered him saying that I would just have to do an ultrasound, thyrogen injections again to stimulate my TSH and then have thyroglobulin drawn. I specifically recall him saying that I wouldn't have to do low iodine diet to do a scan dose of radioactive iodine and repeat scan. I all but threw out my ThyCa cookbook, I was so excited.
Right after the ultrasound, he informed me that I would need to do low-iodine for a week, get the thyrogen injections, take a scan dose of radioactive iodine, and get another scan. Bummer, I thought. I tried to protest and talk him out of it. I just wanted to stop with what we had for testing. He informed me that since I had lymph nodes involved that my recurrence rate was a little higher and that it was best to rescan.
I walked out of there kind of angry. I wasn't angry with him. I was just angry about being inconvenienced. The truth is that a year ago when I was told this was cancer, I blew it off because I knew there were such worse cancers out there. So, I actually just told myself this was just sort of a one-time event and I wouldn't have to worry about it anymore. They got all of it they could with the surgery, then we ablated the rest with the high dose radioactive iodine, end of story.
When I went to my husband's office later and he told me that thinking was probably pretty unrealistic, I protested that as well, arguing that with this cancer, that was perfectly realistic thinking. It wasn't until much later that I realized he was right.
I'm not sure why I let myself believe that I would never again have anything to worry about in regard to my history of thyroid cancer. I know better than that, I'm a nurse. I guess I just don't want to be put into that category (the one I put people in) when I hear that they have had a cancer recurrence.
So, basically I'm going to suck it up and do my inconvenient low-iodine diet, take the thyrogen injections like a woman, swallow the magic little radioactive iodine pill and get the scan. It will be nice to have real peace of mind instead of my false sense of security. I already feel like there's no need to do the further testing, so doing it will only prove it.
Buck up butter cup.
Today was my 1 year follow up with my endocrinologist to do an ultrasound to see how things look. Last we spoke, six months ago, I remembered him saying that I would just have to do an ultrasound, thyrogen injections again to stimulate my TSH and then have thyroglobulin drawn. I specifically recall him saying that I wouldn't have to do low iodine diet to do a scan dose of radioactive iodine and repeat scan. I all but threw out my ThyCa cookbook, I was so excited.
Right after the ultrasound, he informed me that I would need to do low-iodine for a week, get the thyrogen injections, take a scan dose of radioactive iodine, and get another scan. Bummer, I thought. I tried to protest and talk him out of it. I just wanted to stop with what we had for testing. He informed me that since I had lymph nodes involved that my recurrence rate was a little higher and that it was best to rescan.
I walked out of there kind of angry. I wasn't angry with him. I was just angry about being inconvenienced. The truth is that a year ago when I was told this was cancer, I blew it off because I knew there were such worse cancers out there. So, I actually just told myself this was just sort of a one-time event and I wouldn't have to worry about it anymore. They got all of it they could with the surgery, then we ablated the rest with the high dose radioactive iodine, end of story.
When I went to my husband's office later and he told me that thinking was probably pretty unrealistic, I protested that as well, arguing that with this cancer, that was perfectly realistic thinking. It wasn't until much later that I realized he was right.
I'm not sure why I let myself believe that I would never again have anything to worry about in regard to my history of thyroid cancer. I know better than that, I'm a nurse. I guess I just don't want to be put into that category (the one I put people in) when I hear that they have had a cancer recurrence.
So, basically I'm going to suck it up and do my inconvenient low-iodine diet, take the thyrogen injections like a woman, swallow the magic little radioactive iodine pill and get the scan. It will be nice to have real peace of mind instead of my false sense of security. I already feel like there's no need to do the further testing, so doing it will only prove it.
Buck up butter cup.
Monday, June 29, 2009
Sunday, April 19, 2009
Free & Clear
I'm finished! I'm free & clear. At least for now. And, that in itself seems like a huge weight has lifted from my shoulders...unfortunately though, this isn't literal.
I got through the low iodine diet without nearly the trouble I anticipated. It wasn't 'easy', but it wasn't that bad after the first week. There are lots of good recipes in the low iodine cookbook from ThyCa and if you just use fresh ingredients, you can improvise quite a lot, actually.
The radioactive iodine treatment itself was just 2 pills that I swallowed. It was strange to see them come in with it in that lead jar. They put me in a leaded room in the radiology dept. Then the radiologist had to come speak with me and I had to sign some consents. After he left, a tech came in and carrying the pills in this lead container about the size of a large thermos. She set it on a table beside me, then promptly left. She would stick her head in periodically and tell me that we were waiting on nuclear medicine now to come before I could take them. After a little bit of a wait, she returned to the room with another tech from nuclear medicine. He had Geiger counters with him and a clipboard. She had leaded oven mitt looking gloves on and opened the 'thermos'. She then instructed me that I could not touch the medicine. She explained that she would pick up the bottle that was inside the lead thermos, and hand it to me. I was to just empty the pills from the bottle directly in to my mouth. I did, with one of those little miniature bottles of water. After that, the nuclear med tech came at me with a yard stick and his Geiger counter. He took initial measurements at like a foot, then after about 5 minutes, at 3 feet away. It was odd. I didn't feel a bit different, obviously...but, felt as though I must be literally glowing or that I could stick my finger close to something electrical and make it flicker or something. That was it. They gave me a set of instructions and sent me on my way.
That evening wasn't bad until many hours later...and even then, it wasn't that bad. My jawline began to get tender, so I sucked on a bunch of lemons to make sure I was still salivating. I got a tiny bit nauseous, but that could have been from all the lemons. I took my phenergan they had ordered for me and went to bed (after drinking tons and tons of water and going to the bathroom every 5 minutes). The next day I felt sort of sluggish and did basically nothing the entire day. Also, I didn't have much of an appetite. By day three, I could have whatever I wanted to eat. No more low iodine diet. The only problem now was that nothing sounded good. My appetite was very poor. By days four and five, I was pretty much fine. Maybe a slight decrease in appetite, but unfortunately for me, that didn't last long enough.
It's now been a month since my treatment and I still sort of feel tired a lot. I'm not sure why. I recently had an increase on my Levoxyl...but, I can't tell a difference. I'm functioning, but basically just getting by. I suppose that's why I haven't even taken the time to catch up on my writing. I've also had a lot of muscle and joint pain as well as frequent headaches and also low grade fevers at night. Not sure if any or all of it is related. I go back to the endocrinologist in a couple of days for yet more blood work. Hopefully, all will be well and my energy will once again return.
The absolutely great news though, is that I got scanned a week after my radioactive iodine and expect for a little bit of cancer cells showing in the tissue in my neck where my thyroid was....the rest of my body is FREE & CLEAR!!!
I got through the low iodine diet without nearly the trouble I anticipated. It wasn't 'easy', but it wasn't that bad after the first week. There are lots of good recipes in the low iodine cookbook from ThyCa and if you just use fresh ingredients, you can improvise quite a lot, actually.
The radioactive iodine treatment itself was just 2 pills that I swallowed. It was strange to see them come in with it in that lead jar. They put me in a leaded room in the radiology dept. Then the radiologist had to come speak with me and I had to sign some consents. After he left, a tech came in and carrying the pills in this lead container about the size of a large thermos. She set it on a table beside me, then promptly left. She would stick her head in periodically and tell me that we were waiting on nuclear medicine now to come before I could take them. After a little bit of a wait, she returned to the room with another tech from nuclear medicine. He had Geiger counters with him and a clipboard. She had leaded oven mitt looking gloves on and opened the 'thermos'. She then instructed me that I could not touch the medicine. She explained that she would pick up the bottle that was inside the lead thermos, and hand it to me. I was to just empty the pills from the bottle directly in to my mouth. I did, with one of those little miniature bottles of water. After that, the nuclear med tech came at me with a yard stick and his Geiger counter. He took initial measurements at like a foot, then after about 5 minutes, at 3 feet away. It was odd. I didn't feel a bit different, obviously...but, felt as though I must be literally glowing or that I could stick my finger close to something electrical and make it flicker or something. That was it. They gave me a set of instructions and sent me on my way.
That evening wasn't bad until many hours later...and even then, it wasn't that bad. My jawline began to get tender, so I sucked on a bunch of lemons to make sure I was still salivating. I got a tiny bit nauseous, but that could have been from all the lemons. I took my phenergan they had ordered for me and went to bed (after drinking tons and tons of water and going to the bathroom every 5 minutes). The next day I felt sort of sluggish and did basically nothing the entire day. Also, I didn't have much of an appetite. By day three, I could have whatever I wanted to eat. No more low iodine diet. The only problem now was that nothing sounded good. My appetite was very poor. By days four and five, I was pretty much fine. Maybe a slight decrease in appetite, but unfortunately for me, that didn't last long enough.
It's now been a month since my treatment and I still sort of feel tired a lot. I'm not sure why. I recently had an increase on my Levoxyl...but, I can't tell a difference. I'm functioning, but basically just getting by. I suppose that's why I haven't even taken the time to catch up on my writing. I've also had a lot of muscle and joint pain as well as frequent headaches and also low grade fevers at night. Not sure if any or all of it is related. I go back to the endocrinologist in a couple of days for yet more blood work. Hopefully, all will be well and my energy will once again return.
The absolutely great news though, is that I got scanned a week after my radioactive iodine and expect for a little bit of cancer cells showing in the tissue in my neck where my thyroid was....the rest of my body is FREE & CLEAR!!!
Tuesday, February 17, 2009
Where I am
I am...a little over a week from starting my much dreaded low iodine diet. Commercially prepared baked goods and bread are not allowed due to iodate/iodine conditioners that are often added to the dough. One of my good friend's husbands has made some homemade bread for me. In fact, I was given a loaf today and it is quite splendid. I'm not looking forward to this diet, but I feel much better after learning that I will be getting Thyrogen injections, thus eliminating the need to discontinue my Levoxyl and become hypothyroid. So, while I'm not looking forward to it, I'm also not in angst about it.
I am...going to be receiving my radioactive iodine in a little less than a month. I was planning on staying at a hotel that weekend because of my 4 yr. old. However, I was having some ethical issues with this due to the fact that housekeeping would not know how to properly clean up after me (keeping my laundry separate and washing it twice). Another friend offered up her lake house to me for the weekend. Which I gratefully accepted. I will be able to properly clean after myself thus eliminating potential accidental contamination of others who come behind me. It really doesn't entail that much extra...just double wash stuff that your secretions may come in contact with. So, again...no angst.
I am...feeling much better than a couple of weeks ago. I'm back to work full time with call and so far, so good. I'm still exhausted, but not like those first couple of weeks. I can at least keep one foot in front of the other these days and plug along. My low back is increasingly hurting and I have frequent headaches. I'm not sure if this has anything to do with anything...but, it's what I'm currently experiencing. Also, my legs are cramping less, but still cramping badly.
I am...eating much better, but gaining weight. Very discouraging, but at least I'm eating better.
Where I am these days is with lots of friends and all in all in a very good place. I'm thankful to be where I am.
I am...going to be receiving my radioactive iodine in a little less than a month. I was planning on staying at a hotel that weekend because of my 4 yr. old. However, I was having some ethical issues with this due to the fact that housekeeping would not know how to properly clean up after me (keeping my laundry separate and washing it twice). Another friend offered up her lake house to me for the weekend. Which I gratefully accepted. I will be able to properly clean after myself thus eliminating potential accidental contamination of others who come behind me. It really doesn't entail that much extra...just double wash stuff that your secretions may come in contact with. So, again...no angst.
I am...feeling much better than a couple of weeks ago. I'm back to work full time with call and so far, so good. I'm still exhausted, but not like those first couple of weeks. I can at least keep one foot in front of the other these days and plug along. My low back is increasingly hurting and I have frequent headaches. I'm not sure if this has anything to do with anything...but, it's what I'm currently experiencing. Also, my legs are cramping less, but still cramping badly.
I am...eating much better, but gaining weight. Very discouraging, but at least I'm eating better.
Where I am these days is with lots of friends and all in all in a very good place. I'm thankful to be where I am.
Sunday, February 8, 2009
Over the hump?
I think I just may be over the hump. I have had several good days in a row, even while working. I still get that tired achy feeling at night some times and my legs hurt. But, that too seems to be getting better. Fewer and farther between, anyway. I do think one of the keys it seems, for me is allowing at least an hour after taking my Levoxyl before I eat.
A friend who has Hashimoto's thyroiditis and has been going from doctor to doctor to find someone who will take her complaints seriously is now taking Armour. She's going to a medical doctor who practices in alternative medicine. Seems the best of both worlds. Someone who understands the body's physiological functioning in the traditional and non-traditional sense. Anyway, she mentioned that absorption is not an issue with Armour, as she takes it sublingual (under her tongue). When drugs are taken in this manner, they get into your body nearly as quickly as if they were given intravenously. So...I'm wondering if the same could be done for levothyroxine drugs. Obviously, I'm no pharmacist. It may be that levothyroxine needs to be administered on a more sustained basis to provide your body with the metabolic demands it requires. I'm only speculating. But, nonetheless, how great would it be to just pop it under your tongue and then go about your day?
A friend who has Hashimoto's thyroiditis and has been going from doctor to doctor to find someone who will take her complaints seriously is now taking Armour. She's going to a medical doctor who practices in alternative medicine. Seems the best of both worlds. Someone who understands the body's physiological functioning in the traditional and non-traditional sense. Anyway, she mentioned that absorption is not an issue with Armour, as she takes it sublingual (under her tongue). When drugs are taken in this manner, they get into your body nearly as quickly as if they were given intravenously. So...I'm wondering if the same could be done for levothyroxine drugs. Obviously, I'm no pharmacist. It may be that levothyroxine needs to be administered on a more sustained basis to provide your body with the metabolic demands it requires. I'm only speculating. But, nonetheless, how great would it be to just pop it under your tongue and then go about your day?
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