I had my first appointment with my endocrinologist last week, and I like him so far. The main reason for this appointment was to sketch out a plan for what comes next. Although some people have to option to just monitor things going forward, since my tumor was so big (4 cm), the next step is to do radioactive iodine (RAI) treatment.
A quick lesson in thyroid function:
The thyroid uses iodine to make T3 and T4, hormones critical in the regulation of metabolism. When levels of T3 and T4 are low, the pituitary gland secretes thyroid stimulating hormone (TSH), which, as the name suggests, tells the thyroid to get working.
How RAI treatment works:
If you provide the thyroid with a radioactive form of iodine (131I), the cells will concentrate the radioactivity and die. If you have a healthy thyroid, this would be very bad. If you have thyroid cancer, you can use this to eliminate any remaining thyroid cells that may or may not be cancerous. The neat thing about this is that the thyroid is the only part in the body that uses iodine, so there are minimal side effects from this treatment. In order to maximize the uptake of the radiation, you want to do two things: starve the thyroid of iodine and make sure that the levels of TSH are high. So you go on a low iodine diet and either get injections of synthetic TSH (Thyrogen) or go off of your thyroid medication to naturally elevate your TSH levels.
Because of two main factors, scheduling has been a bit of an issue. The first complication is that my insurance will be changing on January 1. My endo likes to send his patients to a certain health system for the treatment, but next year they will be out of network for me. The reason that he sends people there is because the way they do the procedure, they have an easier time of getting Thyrogen, which brings us to the second complication - Thyrogen has been in short supply for a couple years. I initially didn't want to do the treatment until January so that I could enjoy my holidays, but since I don't want to have to go off of my meds (go hypothyroid) and deal with possibly being exhausted and feeling crummy for a few weeks, we decided to try to schedule before the end of the year. Unfortunately, as part of the low iodine diet, I found out that you can't eat fish for 4 weeks before treatment. We eat fish at least once a week, so that put us at the week of Christmas as the earliest option. So the plan is to wait until January and hope that I can get Thyrogen then. If not, I'll have to go hypo and hope for the best.
Wednesday, November 28, 2012
Thursday, November 22, 2012
Giving Thanks
This year more so than ever, I am acutely aware that I have so much to be thankful for.
I am thankful that I found the cancer so early and that it is so treatable. I am thankful for the wonderful medical team treating me and for an excellent surgeon who kept the incision as small as possible so that I wouldn't have a huge scar on my neck. I am thankful for good insurance, which has allowed me to not have to worry about money while worrying about my health.
I am thankful that I am finally feeling like myself again. I am thankful for having energy to do the projects and activities that I want to do. I am thankful for my relative good health - thankful that everything else still seems to be working as it should. I am thankful that even after months of not really exercising, my run this morning felt pretty good.
I am thankful for my incredible husband. I am thankful that he rarely gets sick and that he takes excellent care of me when I do. I am thankful that he always knows how to make me smile, but will let me be sad when I need to be. I am thankful for our dog, for our home, and for the wonderful life that we share.
I am thankful for my amazing support network. I am thankful for my family, both near and far. I am thankful that my mom was able to be with us for both of my surgeries. I am thankful for all of my friends, both new and old. I am thankful for the local ThyCa support group that I found. I am thankful for all of the messages, cards, and care packages that I have received. I am thankful for all of the thoughts, prayers, and love sent my way that are helping me stay strong throughout this ordeal.
Happy Thanksgiving, everyone!
I am thankful that I found the cancer so early and that it is so treatable. I am thankful for the wonderful medical team treating me and for an excellent surgeon who kept the incision as small as possible so that I wouldn't have a huge scar on my neck. I am thankful for good insurance, which has allowed me to not have to worry about money while worrying about my health.
I am thankful that I am finally feeling like myself again. I am thankful for having energy to do the projects and activities that I want to do. I am thankful for my relative good health - thankful that everything else still seems to be working as it should. I am thankful that even after months of not really exercising, my run this morning felt pretty good.
I am thankful for my incredible husband. I am thankful that he rarely gets sick and that he takes excellent care of me when I do. I am thankful that he always knows how to make me smile, but will let me be sad when I need to be. I am thankful for our dog, for our home, and for the wonderful life that we share.
I am thankful for my amazing support network. I am thankful for my family, both near and far. I am thankful that my mom was able to be with us for both of my surgeries. I am thankful for all of my friends, both new and old. I am thankful for the local ThyCa support group that I found. I am thankful for all of the messages, cards, and care packages that I have received. I am thankful for all of the thoughts, prayers, and love sent my way that are helping me stay strong throughout this ordeal.
Happy Thanksgiving, everyone!
Monday, November 12, 2012
A Rather Long Update
The blog title is now official. Surgery #2 went well.
We checked into the hospital right around 11 last Monday morning and got paperwork taken care of pretty quickly. I changed into my stylish hospital garments and found out that the doctor actually wanted to move my surgery time up by about 30 minutes - no complaints from me there! Since everything went so well last time, they gave me all of the same drugs for anesthesia and for nausea, which worked just as well the second time through. I was told that this surgery itself went faster than the first (I wouldn't know), but that I spent longer in the recovery room.
Last time when I woke up in the recovery room, I remember being very mentally alert but not able to really talk or move for a while. My doctor came by to talk to me, but all I could really do was mumble, so he had to come back later when I was more awake. This time, I was much more with it when I woke up, but my throat was hugely sore and I had almost no voice at all - I guess whoever did my intubation this time wasn't as gentle. I also remember having an argument with myself over whether anesthesia having worn off meant I was supposed to stay awake or not - the sleepy part of me won.
The dinner situation was decidedly better the second time around. Last time, by the time I got to my room and wanted to eat anything, the cafeteria was closed and all they could bring me that was gluten-free was jello, applesauce, and rice chex, which, while delicious, do not a dinner make. This time, I asked a nurse if a dinner could be held for me, explaining what had happened before. She said she would take care of it. There was a full dinner waiting for me when I got to the room, and it had apparently come up with strict instructions to make sure it was saved for me.
The night was mostly uneventful. Various nurses came and went throughout the night to check my vitals, take blood to check my calcium levels, see if I needed pain medicine or to go to the bathroom, etc. I managed to go through the night with only a couple doses of pain meds. (I took the meds religiously after the first surgery, and I think they contributed to the migraine I had a few days post-op, so this time around I tried to stay off of them as much as possible.) Knowing the routine was a big help, and I definitely slept better the second time through. (My incredibly wonderful husband stayed with me both times, though I don't think sleeping in one of the hospital recliners was any better the second time than the first.)
Breakfast, oddly enough, didn't go as smoothly this time. I had thought that after getting dinner worked out, breakfast wouldn't be an issue. Somehow, even though it was clearly marked on my dinner that I needed gluten-free, breakfast showed up decidedly not. We double-checked, because last time when french toast showed up, I just assumed it was a mistake only to find out that it was delightfully gluten-free. This time, however, was a mistake, but one of my nurses called in and got some of the good french toast sent up for me.
Both times through, all of the nurses I had were incredible. They were all kind, friendly, and helpful, and to me, their presence and demeanor always felt calm and reassuring - all very much needed and appreciated in a stressful situation. So a great big THANK YOU to all nurses: this whole experience has given me a huge appreciation for what you do, and I am so incredibly grateful that there are people like you who can handle it as well as you do.
After we checked out Tuesday, we stopped by our polling place to vote on the way home. I kept my hospital bracelets on just in case I needed to flash them to get to the front of a line. There was no one else there, so we were done very quickly with no bracelet-flashing needed (though the woman who signed me in did see them and told me to feel better soon).
Overall, minus the more sore throat, I felt better after surgery #2 than I did after #1. Maybe it was because after the first surgery, my poor half thyroid couldn't really keep up and I was low on thyroid hormone, whereas this time I started taking synthroid Tuesday morning. Or maybe it was because this time I only took half doses of vicodin and switched off of it pretty quickly and that stuff really messes with me more than I think. Whatever the reason, I was feeling pretty good about everything.
And then on Thursday night, I got leveled with a stomach bug. A really nasty stomach bug. A 'sleep on the bathroom floor because you're not going anywhere else' kind of stomach bug. About 12 hours after it all started, I was finally able to keep some water down again. And it wasn't until the next day that I was eating food with any amount of confidence. One big problem with not being able to keep anything down is that 'anything' includes medicine, and that includes thyroid medicine. So combine the stomach bug with missing my medication on Friday, and the result is that my speedy recovery turned into me only starting to feel normal again today (which is part of why this update is so late).
But the surgeries are over. My thyroid is completely gone - and the good news is that the pathology on the left side came back clean. Next week is my first appointment with an endocrinologist, and that's when we'll find out what happens next.
We checked into the hospital right around 11 last Monday morning and got paperwork taken care of pretty quickly. I changed into my stylish hospital garments and found out that the doctor actually wanted to move my surgery time up by about 30 minutes - no complaints from me there! Since everything went so well last time, they gave me all of the same drugs for anesthesia and for nausea, which worked just as well the second time through. I was told that this surgery itself went faster than the first (I wouldn't know), but that I spent longer in the recovery room.
Last time when I woke up in the recovery room, I remember being very mentally alert but not able to really talk or move for a while. My doctor came by to talk to me, but all I could really do was mumble, so he had to come back later when I was more awake. This time, I was much more with it when I woke up, but my throat was hugely sore and I had almost no voice at all - I guess whoever did my intubation this time wasn't as gentle. I also remember having an argument with myself over whether anesthesia having worn off meant I was supposed to stay awake or not - the sleepy part of me won.
The dinner situation was decidedly better the second time around. Last time, by the time I got to my room and wanted to eat anything, the cafeteria was closed and all they could bring me that was gluten-free was jello, applesauce, and rice chex, which, while delicious, do not a dinner make. This time, I asked a nurse if a dinner could be held for me, explaining what had happened before. She said she would take care of it. There was a full dinner waiting for me when I got to the room, and it had apparently come up with strict instructions to make sure it was saved for me.
The night was mostly uneventful. Various nurses came and went throughout the night to check my vitals, take blood to check my calcium levels, see if I needed pain medicine or to go to the bathroom, etc. I managed to go through the night with only a couple doses of pain meds. (I took the meds religiously after the first surgery, and I think they contributed to the migraine I had a few days post-op, so this time around I tried to stay off of them as much as possible.) Knowing the routine was a big help, and I definitely slept better the second time through. (My incredibly wonderful husband stayed with me both times, though I don't think sleeping in one of the hospital recliners was any better the second time than the first.)
Breakfast, oddly enough, didn't go as smoothly this time. I had thought that after getting dinner worked out, breakfast wouldn't be an issue. Somehow, even though it was clearly marked on my dinner that I needed gluten-free, breakfast showed up decidedly not. We double-checked, because last time when french toast showed up, I just assumed it was a mistake only to find out that it was delightfully gluten-free. This time, however, was a mistake, but one of my nurses called in and got some of the good french toast sent up for me.
Both times through, all of the nurses I had were incredible. They were all kind, friendly, and helpful, and to me, their presence and demeanor always felt calm and reassuring - all very much needed and appreciated in a stressful situation. So a great big THANK YOU to all nurses: this whole experience has given me a huge appreciation for what you do, and I am so incredibly grateful that there are people like you who can handle it as well as you do.
After we checked out Tuesday, we stopped by our polling place to vote on the way home. I kept my hospital bracelets on just in case I needed to flash them to get to the front of a line. There was no one else there, so we were done very quickly with no bracelet-flashing needed (though the woman who signed me in did see them and told me to feel better soon).
Overall, minus the more sore throat, I felt better after surgery #2 than I did after #1. Maybe it was because after the first surgery, my poor half thyroid couldn't really keep up and I was low on thyroid hormone, whereas this time I started taking synthroid Tuesday morning. Or maybe it was because this time I only took half doses of vicodin and switched off of it pretty quickly and that stuff really messes with me more than I think. Whatever the reason, I was feeling pretty good about everything.
And then on Thursday night, I got leveled with a stomach bug. A really nasty stomach bug. A 'sleep on the bathroom floor because you're not going anywhere else' kind of stomach bug. About 12 hours after it all started, I was finally able to keep some water down again. And it wasn't until the next day that I was eating food with any amount of confidence. One big problem with not being able to keep anything down is that 'anything' includes medicine, and that includes thyroid medicine. So combine the stomach bug with missing my medication on Friday, and the result is that my speedy recovery turned into me only starting to feel normal again today (which is part of why this update is so late).
But the surgeries are over. My thyroid is completely gone - and the good news is that the pathology on the left side came back clean. Next week is my first appointment with an endocrinologist, and that's when we'll find out what happens next.
Sunday, November 4, 2012
Cancer Quilt - Part 2
Even after deciding on the color scheme, picking the fabrics for a quilt usually takes me quite some time. I start by wandering around all the fabrics to get an idea of what's available. Then I'll start pulling out all of the bolts in my color scheme that catch my eye - I always pull out more fabrics than I'll ultimately need so that I can play around with the combinations. Once I've got all the bolts in a pile, it's time for a tried and true technique: I take a step back, tilt my head to the side, and squint. I'll rearrange the order of the bolts, switching different fabrics in and out until I'm satisfied with what I've got (with lots of stepping back and squinting throughout).
This time things went a lot more quickly than I had expected. Teal, pink, and blue is not a color combination I would have come up with on my own, so I thought I might struggle trying to find a cohesive group of fabrics. Instead, all of the right fabrics seemed to just jump off of the shelves, and after a few rounds of shuffling bolts, I was done.
A closer view of the pinks ...
... and the teals/blues
The frustrating thing this past week was that even though I had a free day off of work (due to the power outage), I couldn't work on the quilt (due to the power outage - everything needed to be ironed!). But due to the storm, Trick-or-Treating got postponed until Saturday evening, and I discovered that waiting for kids to show up at the door was a great time to be working on the quilt. After that work session plus a little bit more this morning, all of my squares are cut and are ready to be sewn into 9 patches.
This time things went a lot more quickly than I had expected. Teal, pink, and blue is not a color combination I would have come up with on my own, so I thought I might struggle trying to find a cohesive group of fabrics. Instead, all of the right fabrics seemed to just jump off of the shelves, and after a few rounds of shuffling bolts, I was done.
A closer view of the pinks ...
... and the teals/blues
The frustrating thing this past week was that even though I had a free day off of work (due to the power outage), I couldn't work on the quilt (due to the power outage - everything needed to be ironed!). But due to the storm, Trick-or-Treating got postponed until Saturday evening, and I discovered that waiting for kids to show up at the door was a great time to be working on the quilt. After that work session plus a little bit more this morning, all of my squares are cut and are ready to be sewn into 9 patches.
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