It's been over 24 hours of being radioactive, and things have been going pretty well.
The biggest issue ended up revolving around a pregnancy test. They won't do the treatment if you're pregnant, so you have to have a pregnancy test, but it has to be done within a certain number of hours of when you would get the radiation. Since I was getting my dose on Wednesday, this meant that my test needed to be Sunday or later. I also had to have a pregnancy test done before they would administer my Thyrogen injections, which started on Monday. So I really needed to have the test done on Sunday, but the lab where I needed to go is closed on Sundays. So I went on Saturday so I could get my injections, fully aware that this meant that when I went for my pre-scan on Tuesday, they would need to do another test.
I got my injections Monday and Tuesday mornings without any trouble, and when I arrived at the nuclear medicine department Tuesday afternoon, I told them that I needed to have another pregnancy test done since I wasn't able to get it within the window they wanted. The nurses/technicians didn't want to have to wait for the results of blood work, so they went to talk to a couple people higher up. One guy (who I had spoken to on the phone about the scheduling and timing) got very snippy about it, complaining that I hadn't followed his directions even though he "explained it all very clearly on the phone". I got annoyed because he had told me that if I got the test before Sunday, I'd have to get another one on Tuesday and that's what I was ready to do! After much discussion with people at various levels up to the radiation safety officer, they decided that it would be acceptable to document that in addition to my negative test from Saturday, I was providing verbal confirmation that I could not have become pregnant since then.
After taking the tracer dose and getting a full body scan, I went home. On Wednesday morning, I got another full body scan done and they measured my uptake level (4%). Based on their measurements, they calculated out a dose of 100 mCi. The pills are made at a radiopharmacy in a neighboring town, so they had to call it in and wait for it to be driven over. During the wait, I had a talk with a doctor and regarding the medical aspects and implications of the treatment and a talk with a physicist regarding all the safety precautions that I'd need to follow because for a short time, I'd be spraying radiation around "like an open x-ray tube". After the pill showed up, 3 people had to watch and sign off that I had taken it, and then I was sent home.
So for a few days, I'm camped out at the other end of the house from my husband, with my own bedroom and bathroom. Since the first couple days is when the most excretion occurs, I've been mainly keeping to my room so as to not contaminate the rest of the house, making quick trips to the kitchen whenever I need food. I've mostly been sleeping and reading, with some sudoku thrown in for variety. I've felt mostly normal too, which is good. I felt like I had a bad cold when I woke up (sore throat, stuffy, achy, etc.) but that's mostly gone now. My stomach has also felt a little on edge on and off throughout the day - not nauseous, but more like ... tentative. Either could be treatment related or not. I think the stomach might have more to do with the fact that I was allowed to go off the diet today and so I had dairy products for the first time in almost 4 weeks. My stomach might not approve of that, but my taste buds sure did!
I go back for a follow-up scan on the 30th, and I have to get my thyroglobulin and TSH levels checked next week as well. And then we'll see how things go from there!
Thursday, January 24, 2013
Tuesday, January 15, 2013
Approaching RAI
Before Christmas, the plan that I made with my endo's office was that I would start my low iodine diet on January 1st and then call the office on January 2nd to get my Thyrogen prescription (they couldn't send it in earlier because of my insurance change). Once we knew if/when I'd be able to get the Thyrogen, we'd set a date for the actual RAI treatment.
So I started my low iodine diet on the1st as planned ... only counting the part of the 1st after having gone to bed from the night before :) On the 2nd, I called my endo's office and they sent the prescription over to my new pharmacy. On the 3rd, I called to pharmacy to check if they would be able to fill it. At the end of the day on the 3rd, I had my Thyrogen at home, waiting in the fridge - hooray! Then on the 4th, I called my endo again and we set a date: RAI treatment on January 23rd.
On the 21st and 22nd, I go to my endo's office in the morning to get the Thyrogen shots (one each day) to up my TSH levels. Then in the afternoon on the 22nd, I go to the nuclear medicine department to get a small, diagnostic dose of RAI and have a preliminary scan done. I go back and get another scan the morning of the 23rd, and they use the information from both of those scans to calculate the size of the treatment dose. By lunchtime on the 23rd, I should have received my radiation and be in my isolation period (about 4-5 days, depending on the size of the dose). A week later, on the 30th, I go back for another scan.
How things are going so far: the low iodine diet is both a fun challenge and a huge annoyance. It makes meal planning pretty complicated, but I've made and tried things that I probably never would have otherwise. I've roasted my own chick peas and red peppers, tried out a new pancake recipe, and made my own almond milk and tortillas. I found a really tasty white bean dip recipe and modified a different recipe for a tomato and acorn squash pasta sauce. Plus I've tried out several salad dressing recipes, the top two so far being a raspberry vinaigrette and a honey-tahini dressing. But it's not simple to figure out what to eat and when: trying to get enough protein at various meals and making sure I have enough snacks to get me through the day has required a bit of creativity. I've discovered that some things I thought were good snacks are not - I seem to get headaches after eating raw broccoli, and possibly after parsley too. Fortunately, I don't have to follow this diet for too much longer, and I can't wait to eat a bunch of cheese! (If you want to learn more about all of the dietary restrictions, read this)
So I started my low iodine diet on the1st as planned ... only counting the part of the 1st after having gone to bed from the night before :) On the 2nd, I called my endo's office and they sent the prescription over to my new pharmacy. On the 3rd, I called to pharmacy to check if they would be able to fill it. At the end of the day on the 3rd, I had my Thyrogen at home, waiting in the fridge - hooray! Then on the 4th, I called my endo again and we set a date: RAI treatment on January 23rd.
On the 21st and 22nd, I go to my endo's office in the morning to get the Thyrogen shots (one each day) to up my TSH levels. Then in the afternoon on the 22nd, I go to the nuclear medicine department to get a small, diagnostic dose of RAI and have a preliminary scan done. I go back and get another scan the morning of the 23rd, and they use the information from both of those scans to calculate the size of the treatment dose. By lunchtime on the 23rd, I should have received my radiation and be in my isolation period (about 4-5 days, depending on the size of the dose). A week later, on the 30th, I go back for another scan.
How things are going so far: the low iodine diet is both a fun challenge and a huge annoyance. It makes meal planning pretty complicated, but I've made and tried things that I probably never would have otherwise. I've roasted my own chick peas and red peppers, tried out a new pancake recipe, and made my own almond milk and tortillas. I found a really tasty white bean dip recipe and modified a different recipe for a tomato and acorn squash pasta sauce. Plus I've tried out several salad dressing recipes, the top two so far being a raspberry vinaigrette and a honey-tahini dressing. But it's not simple to figure out what to eat and when: trying to get enough protein at various meals and making sure I have enough snacks to get me through the day has required a bit of creativity. I've discovered that some things I thought were good snacks are not - I seem to get headaches after eating raw broccoli, and possibly after parsley too. Fortunately, I don't have to follow this diet for too much longer, and I can't wait to eat a bunch of cheese! (If you want to learn more about all of the dietary restrictions, read this)
Monday, January 14, 2013
If I'm Being Honest
Up until now, the hardest post for me was the very first one. I wanted that first post to tell people what was going on and to let them understand some of what I was feeling. It needed to be serious without being too somber, informative without being overwhelming. It took me a long time to get the right words, to convey the right sentiments. It was hard to get all my thoughts sorted out and presented the way I wanted them.
Even though I want all of the same things from this post as from the first one, this post is going to be much more difficult to write and share. It's much easier to tell people that things are "pretty good" than to try and explain exactly how complicated they really are. It's much easier to just put on a brave face and try to push through than to be vulnerable and let the world see that I don't really have it all together. But part of the reason for keeping this blog was to keep everyone informed of how things were going and of how I am doing, and if I leave this out, I'm not sharing the whole picture. So as hard as it is to share this side, I'm writing this to complete the picture. I don't want everyone to think I'm handling everything beautifully 100% of the time; although I'm doing my very best and it's a wonderful picture to have of the situation, it isn't at all the truth.
For the most part, things really have been pretty good. For the most part, I've been coping very well. For the most part, I feel lucky and appreciate how good I actually have it. But I think in a lot of ways, I've focused so much on the positives that I haven't fully processed and dealt with the negatives, and I think that all of the emotional turmoil of the last 5 months finally caught up with me. It was a rough weekend, complete with two separate meltdowns, and here's what I sifted out of it all:
I realized that I'm angry at this whole situation, because frankly, it just isn't fair. I live a pretty healthy life and try to take good care of myself - I exercise, try to eat right, to get enough sleep, but it wasn't good enough. It feels like I did everything I could but I got sick anyway and it sucks. It really sucks. I have to take medication every day for the rest of my life or my body will literally shut down. I have to have radiation treatment that will increase my chances of getting a different cancer in order to decrease the chances of this one coming back. I have to have regular blood work and doctor's appointments to make sure we're managing my hormone levels and to watch out for the cancer coming back. I'm too young to be dealing with all this.
I'm anxious about the radiation treatment. It's about as minimally invasive as treatment could be, but people still experience a whole gamut of side effects, and I'll have to be isolated from everyone for a few days. That means that my husband, who has been my unwavering rock throughout this whole ordeal, will have to stay at least 6 feet away from me during that time. If I get upset or feel overwhelmed, I can't go cry on his shoulder. And even if I get sick from the radiation and don't feel well, I'll have to deal with it by myself.
I hate not having a better support network at work. Most days, I just want to stay home. I have some fantastic friends that I met at work, but they're in different buildings and we don't really work together at all. Most of the people with whom I do interact on a daily basis don't know what's going on, but I don't know them well enough to want to tell them. I miss my former coworkers like crazy.
I go to a support group meeting once a month, but I don't know the other people in the group very well yet, and that meeting is the only time I see them - that doesn't do a whole lot to support me the rest of the month. Everyone I've met there is really nice and I'm sure would be perfectly willing to meet and talk with me at other times, but I'm not very good at admitting that I need help.
This pre-treatment diet is a pain in the butt. Combined with my gluten-free needs, it makes figuring out meals anything but simple. I can't grab a snack from the cafe or go out to eat with friends - everything has to be planned out. And I've been struggling with headaches that seem to be related to the diet changes.
I'm pretty worn out, and I just wish I could be normal again.
Even though I want all of the same things from this post as from the first one, this post is going to be much more difficult to write and share. It's much easier to tell people that things are "pretty good" than to try and explain exactly how complicated they really are. It's much easier to just put on a brave face and try to push through than to be vulnerable and let the world see that I don't really have it all together. But part of the reason for keeping this blog was to keep everyone informed of how things were going and of how I am doing, and if I leave this out, I'm not sharing the whole picture. So as hard as it is to share this side, I'm writing this to complete the picture. I don't want everyone to think I'm handling everything beautifully 100% of the time; although I'm doing my very best and it's a wonderful picture to have of the situation, it isn't at all the truth.
For the most part, things really have been pretty good. For the most part, I've been coping very well. For the most part, I feel lucky and appreciate how good I actually have it. But I think in a lot of ways, I've focused so much on the positives that I haven't fully processed and dealt with the negatives, and I think that all of the emotional turmoil of the last 5 months finally caught up with me. It was a rough weekend, complete with two separate meltdowns, and here's what I sifted out of it all:
I realized that I'm angry at this whole situation, because frankly, it just isn't fair. I live a pretty healthy life and try to take good care of myself - I exercise, try to eat right, to get enough sleep, but it wasn't good enough. It feels like I did everything I could but I got sick anyway and it sucks. It really sucks. I have to take medication every day for the rest of my life or my body will literally shut down. I have to have radiation treatment that will increase my chances of getting a different cancer in order to decrease the chances of this one coming back. I have to have regular blood work and doctor's appointments to make sure we're managing my hormone levels and to watch out for the cancer coming back. I'm too young to be dealing with all this.
I'm anxious about the radiation treatment. It's about as minimally invasive as treatment could be, but people still experience a whole gamut of side effects, and I'll have to be isolated from everyone for a few days. That means that my husband, who has been my unwavering rock throughout this whole ordeal, will have to stay at least 6 feet away from me during that time. If I get upset or feel overwhelmed, I can't go cry on his shoulder. And even if I get sick from the radiation and don't feel well, I'll have to deal with it by myself.
I hate not having a better support network at work. Most days, I just want to stay home. I have some fantastic friends that I met at work, but they're in different buildings and we don't really work together at all. Most of the people with whom I do interact on a daily basis don't know what's going on, but I don't know them well enough to want to tell them. I miss my former coworkers like crazy.
I go to a support group meeting once a month, but I don't know the other people in the group very well yet, and that meeting is the only time I see them - that doesn't do a whole lot to support me the rest of the month. Everyone I've met there is really nice and I'm sure would be perfectly willing to meet and talk with me at other times, but I'm not very good at admitting that I need help.
This pre-treatment diet is a pain in the butt. Combined with my gluten-free needs, it makes figuring out meals anything but simple. I can't grab a snack from the cafe or go out to eat with friends - everything has to be planned out. And I've been struggling with headaches that seem to be related to the diet changes.
I'm pretty worn out, and I just wish I could be normal again.
Friday, January 11, 2013
Merry Christmas and Happy New Year!
On the first day of Christmas, my true love gave to me ...
a new thyroid!
We had a lovely Christmas, full of many firsts: our first in our house, our first time hosting, and my first without a thyroid (well, until I opened my presents!). Everything went well and we had a wonderful time. Then we spent New Year's Eve eating, drinking, and being merry with two of my favorite people - best start to the year in a long time :) I was completely on vacation: no work, no doctor's appointments, no (extra) dietary restrictions (yet), just some quality relaxing time. And it was awesome.
So a belated Happy New Year to everyone - may your year turn out to be everything you hoped it would be!
a new thyroid!
We had a lovely Christmas, full of many firsts: our first in our house, our first time hosting, and my first without a thyroid (well, until I opened my presents!). Everything went well and we had a wonderful time. Then we spent New Year's Eve eating, drinking, and being merry with two of my favorite people - best start to the year in a long time :) I was completely on vacation: no work, no doctor's appointments, no (extra) dietary restrictions (yet), just some quality relaxing time. And it was awesome.
So a belated Happy New Year to everyone - may your year turn out to be everything you hoped it would be!
Tuesday, January 1, 2013
Cancer Quilt - Part 3
The long-promised quilt update is here! Although I've been spending most of my time on other projects, there has been a bit of progress in the quilt's status. Since the last post where all of the fabrics were cut, all of the nine-patches have been assembled. I started by laying all of the squares out on the floor to make sure I liked the arrangement. (Just ignore the mess - nothing is in the same place as it was in this picture anyway!)
I didn't want any of my nine-patches to be the same, and I wanted to make sure the same fabrics weren't always next to each other. After I was happy with what I had, I sewed them all together.
The blocks have all been pressed and now they need to be trimmed and then each cut into four pieces.
I don't plan on working much on this quilt in the next couple weeks because I got our wedding quilt back from the shop a couple weeks ago and now I need to finish it so we can hang it up! But I figure I should have lots of time for it and other projects while I'm in isolation :)
I didn't want any of my nine-patches to be the same, and I wanted to make sure the same fabrics weren't always next to each other. After I was happy with what I had, I sewed them all together.
The blocks have all been pressed and now they need to be trimmed and then each cut into four pieces.
I don't plan on working much on this quilt in the next couple weeks because I got our wedding quilt back from the shop a couple weeks ago and now I need to finish it so we can hang it up! But I figure I should have lots of time for it and other projects while I'm in isolation :)
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