I'm officially a radioactive hazard! In fact the whole thing was surprisingly easy and anticlimactic! After much waiting, we were taken in and the doctor walked us through all the ristrictions and warnings, I signed a whole lot of papers, was taken in the back, swallowed a few pills and sent on my way.
It's still a bit crazy to me to think that the main cause for this kind of cancer is also the cure! And while it has a lot of possible down sides to radioactive treatment, the pros outweigh the cons, and it's clearly the best option in my case. There is only a 10-30% chance of this treatment not working, and if it doesn't they'd most likely try it again with a bigger dose! The possible effects include a 1% increased chance of developing another cancer, 1% increased chance of a bone marrow depression (which would only need a blood transfusion, the bone marrow itself would recover on its own), a 20% chance of decreased taste sensations that can last up to a year, 20% chance of injury to the salivary glands resulting in dry, sore mouth (they've suggested i suck on sour lemon drops every half hour to stimulate saliva production), a 30% chance of nausea and vomiting in the next few days, and i can't have a baby any time soon. But the positives include KILLING CANCER!!!!! And by tomorrow i can get back onto my meds and normal diet and should be feeling more like myself again in a few weeks! Finally, on the 10th I'll go back for a full body scan, and then I'm done for 6 months when I have my next body scan! WAHOOO!!!
So far i don't feel too different... it almost seemed too easy... not that i'm complaining. Now i'm home, and I can't be within 3 feet of people, and not for too long, but I only have to be isolated completely for 2 days. I had to ride alone in the very back of the car on the ride home. And it was very sad for the dogs when i couldn't touch or greet them when i got home, and I've had to shoo the cats away several times. It's a bit harder than i expected to make sure i dont walk within 3 feet of my parents when just walking around and such too. I have to have use own bathroom too, and Malcolm wont be allowed to sleep at the foot of my bed for a few nights. But thank goodness i can still use my computer and guitar and what not! i think i would have gone crazy locked away without anything to do. Especially since I basically survive off of Skype! Technology is amazing at keeping me connected with everyone in Australia! Especially my wonderful Partner! (I love you Daniel! Couldn't have gotten through this without you!) And it's makes living so far from my parents so much more bearable too! less than 2 weeks and i'll be on a plane back to AUS!!! Can't wait to get my life back! wahoooooo!!!!!!
Monday, November 29, 2010
Let the Radiation Begin!
Today's the big day! the first day of the last part of my treatment! i'm sitting in the hospital cafateria waiting for time to pass by so i can go become radioactive! We got to the hospital just under an hour ago, been moved around a few times, and i got some blood tests done. Next is the waiting game before we head to radiology.
I've been off my meds and on an iodine free diet for about a month now. I'm feeling sluggish and bloated and my brain feels like mush. But luckily it hasn't been to terrible until this last week. As far as symptoms go i would say its a mix between mono and menopause. I'm so exhausted my whole body hurts, and i have been extremely sensitive to tempurature and getting the shakes a lot. But the worst part is the mood swings. I can be happy and laughing one minute and crying the next. I've been having to limit my TV watching to the food network, the comedy channel, and the fishing channel in order to try and keep my emotional swings in check. however, i'll admit even cake decorating has made me cry ta couple times.. I'm sorry to any one that has been caught up in my waves of crazy the past few days! ...But all things consitered its not to horrible and i've only gained a few pounds (which i think thanksgiving is more to blame than anything else) and I'm still in surprisingly good spirits. And the best part: After today i'll go back on my meds and normal diet and should be feeling more like myself in a week or two!
It's been a slow moving day so far, and at least on the surface we're all surprisingly calm and content. Although my mom has decided to tease me by eating a dohnut and hot chocolate in front of me. (I can't eat anything with iodine, and nothing for the rest of the day till after my treatment) In about an hour, we will head over to the radiology for my dose of radioactive iodine. I'm still not sure what exactly is going to happen, but i know that the does will be taken orally, and i suspect they will spend a long time explaining everything and going over protocol and such. For the next few days i will be considered radioactive and will have to be isolated, but i've got my fingers crossed they'll let me use my computer and guitar so i don't go to crazy! But if i'm unable to update on here, i'll make sure to get my family to keep this updated! fingers crossed I gain some cool super powers too!
In other news, Frankie has returned back to Australia :( It was an absolute blast to have her here! It was truly a life saver. Even though I was unable to take her to do as much as i wanted to, I'm increasingly grateful for the distraction! She has a wonderful sense of humor even amid the crazy that is my family! We even got up to the mountains for some fun in the snow! I snowboarded for the first time in at least a year, and Frankie's well on her way to being a skiing pro! I can not thank her and her family enough for her coming over here! I also want to thank my loving boyfriend Daniel! He has been my superhero through this whole mess! and with any luck at all I'll be back in Australia with them both and everyone else who has been loving and supporting me from afar in under 2 weeks!!!!!
This whole experience seems like such a dream! it's hard to believe i was diagnosed almost 4 months ago! It's been a hard thing to deal with, but it some ways i think its been a good experience and its made me and many of my relationships that much stronger! I can't wait to put this whole thing behind me and move forward with my life! I know it's far from over, and life never stops throwing in the unexpected, but like they say, it's all about how you handle plan b!
I've been off my meds and on an iodine free diet for about a month now. I'm feeling sluggish and bloated and my brain feels like mush. But luckily it hasn't been to terrible until this last week. As far as symptoms go i would say its a mix between mono and menopause. I'm so exhausted my whole body hurts, and i have been extremely sensitive to tempurature and getting the shakes a lot. But the worst part is the mood swings. I can be happy and laughing one minute and crying the next. I've been having to limit my TV watching to the food network, the comedy channel, and the fishing channel in order to try and keep my emotional swings in check. however, i'll admit even cake decorating has made me cry ta couple times.. I'm sorry to any one that has been caught up in my waves of crazy the past few days! ...But all things consitered its not to horrible and i've only gained a few pounds (which i think thanksgiving is more to blame than anything else) and I'm still in surprisingly good spirits. And the best part: After today i'll go back on my meds and normal diet and should be feeling more like myself in a week or two!
It's been a slow moving day so far, and at least on the surface we're all surprisingly calm and content. Although my mom has decided to tease me by eating a dohnut and hot chocolate in front of me. (I can't eat anything with iodine, and nothing for the rest of the day till after my treatment) In about an hour, we will head over to the radiology for my dose of radioactive iodine. I'm still not sure what exactly is going to happen, but i know that the does will be taken orally, and i suspect they will spend a long time explaining everything and going over protocol and such. For the next few days i will be considered radioactive and will have to be isolated, but i've got my fingers crossed they'll let me use my computer and guitar so i don't go to crazy! But if i'm unable to update on here, i'll make sure to get my family to keep this updated! fingers crossed I gain some cool super powers too!
In other news, Frankie has returned back to Australia :( It was an absolute blast to have her here! It was truly a life saver. Even though I was unable to take her to do as much as i wanted to, I'm increasingly grateful for the distraction! She has a wonderful sense of humor even amid the crazy that is my family! We even got up to the mountains for some fun in the snow! I snowboarded for the first time in at least a year, and Frankie's well on her way to being a skiing pro! I can not thank her and her family enough for her coming over here! I also want to thank my loving boyfriend Daniel! He has been my superhero through this whole mess! and with any luck at all I'll be back in Australia with them both and everyone else who has been loving and supporting me from afar in under 2 weeks!!!!!
This whole experience seems like such a dream! it's hard to believe i was diagnosed almost 4 months ago! It's been a hard thing to deal with, but it some ways i think its been a good experience and its made me and many of my relationships that much stronger! I can't wait to put this whole thing behind me and move forward with my life! I know it's far from over, and life never stops throwing in the unexpected, but like they say, it's all about how you handle plan b!
Wednesday, November 10, 2010
Test results!
got my test results back from the blood tests they did last week! finally some good news!!!
My TSH (thyroid stimulating hormone) was "appropriately low" which means I was probably on a good dose of hormone and my body's still working well in all the ways it's supposed to even without a thyroid!
T4- was high, but barely and is still a "safe level" (t4 tells if i've gone hypo or hyperthyroid) so we want to be slightly high, so again this is good!
Thyroglobulin - low!!! which means there is very little chance the cancer has spread outside my neck!!
Thyroglobulin antibodies- negative! (this means the thyroiglobulin test was accurate!)
YAY!!!! YAY!!!! YAY!!!!!
other than that things are really great too!!! It's absolutely fantastic to have Frankie visiting! I can feel myself getting more and more exhausted off of my meds, but i'm feeling surprisingly great apart from that! I think i've done more in the last few days and have been feeling better than i have in months! we've been on hikes, to the zoo, and even done some heavy lifting! We also finally had our first snow, and although it didn't even last the night, it was an exciting taste of winter, and we're looking forward to going up to the mountains for some skiing and proper snow covered winter fun! we're all running around the house in joy! At the moment, life is good!
My TSH (thyroid stimulating hormone) was "appropriately low" which means I was probably on a good dose of hormone and my body's still working well in all the ways it's supposed to even without a thyroid!
T4- was high, but barely and is still a "safe level" (t4 tells if i've gone hypo or hyperthyroid) so we want to be slightly high, so again this is good!
Thyroglobulin - low!!! which means there is very little chance the cancer has spread outside my neck!!
Thyroglobulin antibodies- negative! (this means the thyroiglobulin test was accurate!)
YAY!!!! YAY!!!! YAY!!!!!
other than that things are really great too!!! It's absolutely fantastic to have Frankie visiting! I can feel myself getting more and more exhausted off of my meds, but i'm feeling surprisingly great apart from that! I think i've done more in the last few days and have been feeling better than i have in months! we've been on hikes, to the zoo, and even done some heavy lifting! We also finally had our first snow, and although it didn't even last the night, it was an exciting taste of winter, and we're looking forward to going up to the mountains for some skiing and proper snow covered winter fun! we're all running around the house in joy! At the moment, life is good!
Thursday, November 4, 2010
frustrating news
Just got back from my endocrinologist appointment and got very frustrating and hard news. Turns out that the cancer was much worse than anyone would have thought and do to its extent I'll have to go off my hormone for the radioactive iodine treatment and "crash". It also means I wont be able to get my treatment as soon as i had hoped. I have to be off my hormone for at least three weeks first on top of the low iodine diet. But the good news is it hasn't really lowered my chances of a full recovery too much (from a %97 10 year survival rate to a 95% rate), and it's still a better chance than if i was getting the treatment anywhere else. The doctor kept telling us what an odd case I was and how rare it is for it to have been to invasive, but that since i'm young it shouldn't be too terrible, and it's still only a level one cancer case which i've probably had for years.
So we've planned it out with the doctor and if it all goes well i should be done by mid December! They took some blood today which will test my thyroglobulin which is only produced by the thyroid and will tell them how much is left. fingers crossed it's low! I've already started the low iodine diet, and i'll stop taking my hormone tomorrow. It has a half life of a week so i wont be feeling the effects of being off it till about a week after I stop. the crash will be fairly slow and since i'm young they assured me it shouldn't be to terrible. The worst side effect will be that i'll be exhausted more than anything. On the 29th of November I'll get the dose of radioactive iodone. I'll have to have a pretty big dose so I'll have to be isolated for at least 3 days, and have minimum contact with other for about a week. after that i can go back on my hormone and it'll take another 3 to 6 weeks to get it back up again. Than on the 10th of December I'll go back for a body scan. it will tell them how much and where the radioactive iodine has been absorbed. It will also tell them if it has spread anywhere else. There is a very small chance it may have spead to my lungs but we're not even going to think about that yet! After that if all goes well i should be done and able to finally go back home to Australia! About 6 weeks after the treatment i'll get a check up to make sure my hormone prescription is the right level, but other than that i shouldn't need anymore major doctors visits for 6 to 9 months when i'll go back for another body scan.
It's really sucky news to have received, but considering the long run it's a quick fix. And i'm determined to make the most of everything and still be able to laugh! Tonight my best friend Brad and I are going to go see comedian Bob Saget which should be a blast and a really great distraction. On Saturday my other best friend from Australia Frankie will come which will be another great distraction! We'll get to do all the fun touristy things I've never gotten to do before! And i'll be crashing a bit but at least i wont have to be isolated while she is here. I've even recruited Amy too cook us a fantastic iodine free thanksgiving feast! Basically it really fucking sucks, but like everything else, life goes on! All i can say is thank goodness i've got some iodine free chocolate!!!
So we've planned it out with the doctor and if it all goes well i should be done by mid December! They took some blood today which will test my thyroglobulin which is only produced by the thyroid and will tell them how much is left. fingers crossed it's low! I've already started the low iodine diet, and i'll stop taking my hormone tomorrow. It has a half life of a week so i wont be feeling the effects of being off it till about a week after I stop. the crash will be fairly slow and since i'm young they assured me it shouldn't be to terrible. The worst side effect will be that i'll be exhausted more than anything. On the 29th of November I'll get the dose of radioactive iodone. I'll have to have a pretty big dose so I'll have to be isolated for at least 3 days, and have minimum contact with other for about a week. after that i can go back on my hormone and it'll take another 3 to 6 weeks to get it back up again. Than on the 10th of December I'll go back for a body scan. it will tell them how much and where the radioactive iodine has been absorbed. It will also tell them if it has spread anywhere else. There is a very small chance it may have spead to my lungs but we're not even going to think about that yet! After that if all goes well i should be done and able to finally go back home to Australia! About 6 weeks after the treatment i'll get a check up to make sure my hormone prescription is the right level, but other than that i shouldn't need anymore major doctors visits for 6 to 9 months when i'll go back for another body scan.
It's really sucky news to have received, but considering the long run it's a quick fix. And i'm determined to make the most of everything and still be able to laugh! Tonight my best friend Brad and I are going to go see comedian Bob Saget which should be a blast and a really great distraction. On Saturday my other best friend from Australia Frankie will come which will be another great distraction! We'll get to do all the fun touristy things I've never gotten to do before! And i'll be crashing a bit but at least i wont have to be isolated while she is here. I've even recruited Amy too cook us a fantastic iodine free thanksgiving feast! Basically it really fucking sucks, but like everything else, life goes on! All i can say is thank goodness i've got some iodine free chocolate!!!
Tuesday, November 2, 2010
Updates!
Sorry it's taken me so long to update this! I've finally been feeling better, so i've been busy trying to get myself back into the real world again!
I had my post op just over a week ago. My scar is healing well. (I couldn't even be Frankenstein for Halloween it has faded so much, so i had to resort to being an awesome banana instead) the surgeon was clearly very happy with his surgery and didn't have much else to say. He mostly just confirmed that i'm ready to move on to the next step towards being cancer free!!!
The next step is the radioactive iodine treatment. Basically, your thyroid absorbs iodine, so by giving it radioactive iodine any left over thyroid cells and cancer cells will absorb the radioactive version and die! Usually the process for this is that they stop my hormone replacement and allow as much hormone as they can to leave the body before treatment. However, in doing so, it can take many weeks and causes the body to crash into hypothyroidism. This causes depression, weight gain, sluggishness, and a whole mess of other side effects that pretty much make you feel like crap! But, thanks to my doing it at the Hospital in Denver, which is also a research facility, i'm a great test subject (I donated my thyroid too, since i wont be needing it anymore), so we're hoping i can be a part of a trail on new drug that will allow me to stay on my synthetic hormone throughout the treatment and therefor not crash! The new drug is a series of injections leading up the the radioactive iodine itself that will basically trick the body into thinking it has no hormones without all the nasty side effects of actually doing so. of course i'll still be radioactive and need a few days of isolation, but there's a good chance even that wont be that bad! The only reason I might not be able to do this is we still don't know the amount of radioactive iodine i will require yet, and it is most likely more than we had originally thought as the cancer had spread farther than we had originally thought. But we're feeling lucky and have our fingers crossed!
the other part of preparing for the radioactive iodine treatment is an iodine free diet which i started yesterday. basically anything with salt, dairy, or soy in it i can't have! so pretty much everything yummy! But my mom has been a fantastic cook already and we've found some great recipes! and it's lucky i like fresh fruits and veggies! and boulders a good place for fresh food! if only i could eat chocolate too! Seeing all this darned Halloween candy around is a bit cruel! but i only have to do it for 2 weeks, and luckily all things considered its a healthy diet! probably what i need after the cancer diet i was on of my sister cooking massive meals and chocolate cakes all the time!
I've got my endocrinologist appointment on Thursday, and he will confirm everything and give us more details, but if all goes according to plan I should be cancer free by December! With any luck i'll be getting my radioactive iodine on the 12th (with the shots on the 10th and 11th) and will go back in around the 19th for a scan to make sure i haven't turned into a radioactive monster or anything! a week after that i should be allowed to fly internationally and i've even got my flight home booked for the 27th!
Other than that, life is pretty good. My mom and I were starting to rip at the seams from all the stress and overwhelming emotions, so we ran away to cabo for a week! it was exactly what we needed! lots of relaxing in the sun and wonderful food and such happy people! it's kind of hard to be back in the real world of America again, and i've caught a bit of a tummy bug the past few days, but over all i'm in good spirits. My best friend from Australia is coming on Saturday and i'm having a hard time containing my excitement!!! YAY YAY YAY!!!!!
Sorry again it took me so long to update! I'll be sure to update again after my appointment on Thursday with a confirmation on our plans and more details!
I had my post op just over a week ago. My scar is healing well. (I couldn't even be Frankenstein for Halloween it has faded so much, so i had to resort to being an awesome banana instead) the surgeon was clearly very happy with his surgery and didn't have much else to say. He mostly just confirmed that i'm ready to move on to the next step towards being cancer free!!!
The next step is the radioactive iodine treatment. Basically, your thyroid absorbs iodine, so by giving it radioactive iodine any left over thyroid cells and cancer cells will absorb the radioactive version and die! Usually the process for this is that they stop my hormone replacement and allow as much hormone as they can to leave the body before treatment. However, in doing so, it can take many weeks and causes the body to crash into hypothyroidism. This causes depression, weight gain, sluggishness, and a whole mess of other side effects that pretty much make you feel like crap! But, thanks to my doing it at the Hospital in Denver, which is also a research facility, i'm a great test subject (I donated my thyroid too, since i wont be needing it anymore), so we're hoping i can be a part of a trail on new drug that will allow me to stay on my synthetic hormone throughout the treatment and therefor not crash! The new drug is a series of injections leading up the the radioactive iodine itself that will basically trick the body into thinking it has no hormones without all the nasty side effects of actually doing so. of course i'll still be radioactive and need a few days of isolation, but there's a good chance even that wont be that bad! The only reason I might not be able to do this is we still don't know the amount of radioactive iodine i will require yet, and it is most likely more than we had originally thought as the cancer had spread farther than we had originally thought. But we're feeling lucky and have our fingers crossed!
the other part of preparing for the radioactive iodine treatment is an iodine free diet which i started yesterday. basically anything with salt, dairy, or soy in it i can't have! so pretty much everything yummy! But my mom has been a fantastic cook already and we've found some great recipes! and it's lucky i like fresh fruits and veggies! and boulders a good place for fresh food! if only i could eat chocolate too! Seeing all this darned Halloween candy around is a bit cruel! but i only have to do it for 2 weeks, and luckily all things considered its a healthy diet! probably what i need after the cancer diet i was on of my sister cooking massive meals and chocolate cakes all the time!
I've got my endocrinologist appointment on Thursday, and he will confirm everything and give us more details, but if all goes according to plan I should be cancer free by December! With any luck i'll be getting my radioactive iodine on the 12th (with the shots on the 10th and 11th) and will go back in around the 19th for a scan to make sure i haven't turned into a radioactive monster or anything! a week after that i should be allowed to fly internationally and i've even got my flight home booked for the 27th!
Other than that, life is pretty good. My mom and I were starting to rip at the seams from all the stress and overwhelming emotions, so we ran away to cabo for a week! it was exactly what we needed! lots of relaxing in the sun and wonderful food and such happy people! it's kind of hard to be back in the real world of America again, and i've caught a bit of a tummy bug the past few days, but over all i'm in good spirits. My best friend from Australia is coming on Saturday and i'm having a hard time containing my excitement!!! YAY YAY YAY!!!!!
Sorry again it took me so long to update! I'll be sure to update again after my appointment on Thursday with a confirmation on our plans and more details!
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