It's officially been a week since my dose of radioactive iodine! I survived with minimal side effects and have yet to turn into the hulk or start shooting lasers out of my eyes!
All of last week was a bit of a struggle, but all things considered, survivable. One of the hardest parts of being radioactive was the isolation. My poor dog Malcolm is still not fully convinced I still love him. I had to carry a squirt bottle around so every time he came too close I had to squirt him and yell at him (the cats caught on pretty quickly and avoided me, but he's not so clever). He also usually sleep at the foot of my bed, so I had several night of him scratching and whining at my door all night. It was a very sad and confusing time for him. But apart from that and not being able to hug people it wasn't too terrible. I was exhausted and felt pretty sick still for most of it, so I spent most of my time sleeping anyways. The only real side effects I noticed was a bit of tingling, aching and swelling in my throat, and waves of nausea. I also had to suck on sour lemon candy every half hour, and after a while the roof of my mouth and tongue where a mess! By far the most frustrating thing was that despite being able to go back on my meds and eating real food again, I was still incredibly exhausted and felt too sick to eat much, not to mention I was still an emotional wreck. And thanks to having been off my meds thus slowing my metabolism (and i blame thanksgiving too) I managed to gain almost 10 pounds in 2 weeks! I was also overly hopeful about really starting to feeling better right away, and instead found myself still stick in bed for another week which was not surprising but very frustrating.
But the good news is I am finally starting to feel better!!! Today is the first real day I'm starting to feel like myself again. I even managed to watch Toystory 3 and only cry at the parts that were actually sad/cry worthy! And I've managed to make it out of the house for several hours today and get some errands done in preparation for my return home! I'm still exhausted and not feeling %100 yet, but I finally feel like I'm on the road to recovery! I've even worked off a few pounds now that my metabolism is back! And yesterday we had a really wonderful "Christmas/Hanukkah" brunch with some family which was really special and made me feel much better too! It's really hard to be leaving everyone so close to the holidays!
So now all I've got left treatment wise is a body scan on Friday! We wont get the results back from in for 2 weeks after it, but it should tell us where and how much radioactive iodine was absorbed and will give a good indication of if and where it might have spread. But the prognosis is very good, and all my blood work indicates it hasn't spread and that this dose of radioactivity should kill off any cancerous cells that are left!!! It's all very scary, but exciting and very surreal!
And finally, on Saturday, I catch my flight back to Australia! It's so strange to think by this time next week I'll be back in Tasmania again! It's hard to believe i'll have been back here for over 4 months! Yet at the same time, It seems like i'm leaving all too soon! Everyone has been so wonderful and supportive! It's going to be hard to leave all these people who I love so much and have been here for me through everything! But it will also be so wonderful to reunite with everyone who has been so wonderful and supportive from across the globe! I just wish my two homes didn't have to be so far apart!
So, we'll let everyone know how the scan goes and keep this up to date if anything new comes up, but this may be one of my last entries for this blog! It's been bittersweet! It's been scary and awful and unfair, and I do not wish this upon anyone. Yet it has also helped me find who I am. I never would have dreamed that an experience like this could have been in any way good, but in a lot of ways, it has reminded me how wonderful life is and just how lucky I am. I've had times where I had started to doubt my faith in humanity, and this brought me back to remembering all the small blessings we have. It's reminded me how much love there is in this world, and how very important that is. I love everyone so much and could never find the right words to express how greatful I am to have so much love and support in my life! I could never have come through this without It! Thanks you!
Monday, December 6, 2010
Monday, November 29, 2010
Officially Radioactive!
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!!!!!!
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!!!!!!
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!
Wednesday, October 6, 2010
Pathology Report
Just got off the phone with Pathology and my report is back from surgery. It basically just confirmed what the surgery suspected. There were multiple areas on both sides of my thyroid that showed signs of papillary tumors and cells. The right side had the dominant tumor (which was the one they originality found and diagnosed, so that's no surprise) out of the 14 lymph nodes they removed 11 were positive for papillary carcinoma as well. The majority of which were also on the right side. this means it was a locally invasive tumor. There are likely some cells that they didn't see, so the next step will be to see the endocrinologist once I'm healed and we'll discuss my options for the radioactive iodine, which will mop up the rest of the cancer cells in the area! I've also donated my thyroid to cancer research since I wont be needing it, and hopefully it can help them to help others going through this!
It's hard news to take, but it's what we were expecting. But the good news is that its now mostly out, and I still have the same great odds of a full recovery. I'm also feeling better and better every day! And my scar is giving me some great opportunities for Halloween costumes! We've got my post-op on the 26th, and my endocrinology appointment on the 4th, so we'll take it all as it comes.
It's hard news to take, but it's what we were expecting. But the good news is that its now mostly out, and I still have the same great odds of a full recovery. I'm also feeling better and better every day! And my scar is giving me some great opportunities for Halloween costumes! We've got my post-op on the 26th, and my endocrinology appointment on the 4th, so we'll take it all as it comes.
Tuesday, October 5, 2010
Recovering
I've officially been thyroid free for 4 days! I'm still very drained and not feeling all that great, but I've been recovery much faster than i ever would have imagined! I've already been able to eat solid foods and have been moving around the house pretty freely. I even got my bandage off and have an impressive but not all that massive scar! I've been getting some great ideas for stories for it too! everything from bar fights to saving orphan kittens from burning building, or that I'm a robot and they needed to reboot me!
the surgery was much easier than i anticipated and i got lots of funny stories from the nurses. I was surprisingly calm and just knew deep down that it was going to be fine. Apparently i was laughing and telling jokes the whole time going under and waking up from the anesthesia. And I don't really remember, but i know i had a wonderful dream while under that involved a beach, my grandfather(who passed away from cancer, but has been with me through this whole thing) and a lot of people trying to talk me into eating a roast beef sandwich! very odd but somehow soothing.
The Hospital stay wasn't all that bad either. I ended up staying on the Transplant floor and everyone was extremely friendly and competent. Although they did try to give away my liver at one point in the night on accident. They took very good care of me and were clearly very happy to have such an easy patient. And they got me well and out of there as quickly as they could! i was barely even in the hospital for 24 hours!
I'm also extremely grateful for everyone's wonderful support and love! I could never have gone through any of this without it! I can literally feel all the wonderful vibes and loving energy around me and it is truly magical. It has actually been a wonderful blessing in disguise to allow me to reconnect with so many wonderful people! and I even get my best friend Frankie to come visit!!! the best gift ever!!!! I am so excited!!! I can't thank everyone enough and I love you all!!!
Saturday, October 2, 2010
calcium good - going home!
Katy's calcium level is 9.1 - right in the middle - everyone is amazed and happy at how well Katy is doing! They say they would be the best hospital ever if all there patients were like Katy. She is tired and feeling a little more pain - but enjoying Jackie Chan in Around the World - Arnold Swchrtznagger is playing some weird Sitar thing - good to laugh. Thanks for all the love!
Friday, October 1, 2010
In Katy's Room
We're all up in Katy's room, she is peppy and looking great! Aside from a little band-aid on her neck and a little hoarseness to her voice she's already good as new. She is up on the transplant floor because they are short on general surgery rooms and the nurses are incredibly competent! The room is huge and has a nice view to the South, there are some nice details that make it feel soft and light. They even have room service! Right now Mike, Karen, Bob, Laurie, Gram and I are all chatting and laughing with Katy, who's talking as much as anyone else. Tomorrow morning if her Ca++ levels are normal she can go home, but we'll still ask for short visits while she's healing. She will need a lot of sleep, and probably to rest her voice for a while.
Thanks for all the love!
Thanks for all the love!
Katy is out of surgery!
The surgeon just came out to update us on Katy:
- She is out of surgery and in recovery, the first set of people (Karen and Bob) will get to see her in half an hour or so when she's more alert.
- The tumor was larger than they expected and many of the surrounding lymph glands looked abnormal so they removed everything. It took a bit longer than expected and she probably has a pretty good sized scar.
- Her vocal chords were monitored by a neurologist during the surgery and they look unaffected, which is fantastic! We'll see how she feels in a couple days, until then she'll be hoarse from the ventilation. They used a really cool system for this that we'll try to write more about when we have more energy.
- The surgeon had to mess with her parathyroid more than he wanted, but as he expected. So she needs to spend the night while they monitor her calcium (Ca++) levels. Ca++ is an ion important for nerve function so low levels can cause that terrible pins and needles sensation and even some painful muscle spasms. They'll monitor it closely overnight and supplement as needed.
- She may need to wait six weeks before starting the radioiodine instead of starting in four due to the extent of the surgery, but we will know more later.
Katy is in Surgery
Everything looks great, Katy is in great hands and we are waiting patiently for the next few hours. We will update as soon as we have any news!
Thursday, September 30, 2010
Surgery Tomorrow!
Today Katy, my parents and I went to the pre-op appointment to meet the surgeon and confirm tomorrow's surgery. It was a LONG appointment! Since this is a teaching hospital, Katy was first examined by a second-year student accompanied by a resident. The student ask a lot of questions and then felt Katy's neck, the resident made a couple suggestions to the student, and then they both left to consult with the surgeon. A few minutes later the surgeon and the two others came back in to confirm and clarify.
The major details: The surgeon felt that a total thyroid removal was the best plan given the size of the tumor, and also decided that all the surrounding lymphoids should be removed as well. The lateral lymph glads will stay unless he sees something to make him decide otherwise once he gets in there. There is a chance he will remove the parathyroid glands, which regulate calcium levels, but that's not the plan. The total surgery time should run 2-3 hours. Katy will check in tomorrow at 9:15 am for her 11:15 am (3:15 am in Tassie) surgery, so we should have an update tomorrow evening! As long as her calcium levels are normal she will be released tomorrow evening, otherwise she will have to spend the night while they get the levels back to normal.
The surgeon reassured us that she has only a 1 in 100 chance of permanent voice damage, but there is a slight chance that her voice will change. Apparently the mechanisms of voice are not well enough understood to predict how her voice might change, if it does, but possibilities would include changes to her pitch, volume, or overall control. Hopefully none of this will happen, but we won't know for a while. After surgery her voice will most likely be hoarse and she will continue to feel like it gets tired easily, but she should be able to build it back up no problem!
Katy (and the rest of us) appreciate all the healing thoughts you can send us tomorrow and will keep you updated as soon as we know anything!
The major details: The surgeon felt that a total thyroid removal was the best plan given the size of the tumor, and also decided that all the surrounding lymphoids should be removed as well. The lateral lymph glads will stay unless he sees something to make him decide otherwise once he gets in there. There is a chance he will remove the parathyroid glands, which regulate calcium levels, but that's not the plan. The total surgery time should run 2-3 hours. Katy will check in tomorrow at 9:15 am for her 11:15 am (3:15 am in Tassie) surgery, so we should have an update tomorrow evening! As long as her calcium levels are normal she will be released tomorrow evening, otherwise she will have to spend the night while they get the levels back to normal.
The surgeon reassured us that she has only a 1 in 100 chance of permanent voice damage, but there is a slight chance that her voice will change. Apparently the mechanisms of voice are not well enough understood to predict how her voice might change, if it does, but possibilities would include changes to her pitch, volume, or overall control. Hopefully none of this will happen, but we won't know for a while. After surgery her voice will most likely be hoarse and she will continue to feel like it gets tired easily, but she should be able to build it back up no problem!
Katy (and the rest of us) appreciate all the healing thoughts you can send us tomorrow and will keep you updated as soon as we know anything!
Wednesday, September 29, 2010
forget the waiting! lets go!
wow! so i was woken up with some very exciting and scary new this morning. We got a call from the surgeon and due to a cancellation he wants to do the surgery on Friday! I'm still kind of in shock with the whole thing, but it's very exciting! we've still got the pre-op appointment tomorrow so we'll see what he has to say and if he really wants to do friday. we really aren't sure what he'll say! I'm actually hoping to get it done friday as the waiting is killing me! but i'm very interested to meet the surgeon since i've never even met this doctor before and have no idea what to expect! although i have heard nothing but good things from everyone about him and he's the very top of his field, so i feel good about that! it's all starting to become very real very fast! i'll be sure to keep this up to date tomorrow with what we find out! but i could be under the knife within 2 days! We're all in shock! wow!
Tuesday, September 28, 2010
hurry up and wait!
It's been a while since i've written anything on here so i thought i might as well give an update. nothing new on the medical front. I'm feeling good all things considered. I've been having a really hard time sleeping and i'm tired all the time, but apart from that my physical health seems good! Mostly just trying to occupy my time. Never thought cancer would be so boring! It's all just a lot of waiting.
I've got my pre-operation consultation on thursday! I'm looking forward to finally meeting the surgeon and i'm very interested to hear what he has to say and find out more about the procedure. We're also hoping to make a Denver day out of it too! maybe go to the aquarium and out to dinner! always fun!
basically, all in all things are good. there's a nervous and anxious edge to everything, but we're all holding together pretty well. and if all else fails lots of chocolate always helps!
I've got my pre-operation consultation on thursday! I'm looking forward to finally meeting the surgeon and i'm very interested to hear what he has to say and find out more about the procedure. We're also hoping to make a Denver day out of it too! maybe go to the aquarium and out to dinner! always fun!
basically, all in all things are good. there's a nervous and anxious edge to everything, but we're all holding together pretty well. and if all else fails lots of chocolate always helps!
Thursday, September 16, 2010
first denver visit!
I had my first visit with the thyroid team at CU Denver Medical Campus today; all good news! We loved the doctor! He was very nice and wonderful at explaining everything and more than happy to answer any and all questions we had. We didn't feel at all rushed and I felt very safe in his hands. Everyone in the whole office seemed very component and great to work with. They all smiled and gave us plenty of opportunities to ask too many questions!
At first glance, the endocrinologist was unsure of the cancer diagnosis based on the pathology report from Barton in Lake Tahoe. Because pediatric thyroid nodules are cancerous 25% of the time (and they count up to 20 as pediatric for this particular cancer so I guess I kind of count) he suspected that Barton was correct, but wanted confirmation from their more advanced pathology lab. As he was saying this, the pathologist paged him about the slides... and confirmed the diagnosis. This means there is a 99% chance I have papillary carcinoma, so nothing new there.
It also turns out that they have assigned me one of the top 5 thyroid surgeons in the US, although he was in Paris for an international thyroid conference today so I have to go back and meet him on the 30th. Everyone in the office confirmed that he was the best, and the doctor said that he's who he would send his family to. The odds of my voice being affected are less than 1% with such a skilled surgeon, versus 3-5% with most surgeons, so that's good! Clearly it was worth waiting!
The best news is that because they are a teaching hospital, they can give me a post-op treatment that is still in the FDA approval process so no one else could offer it. With this routine, I won't have to be on any weird diets and I can start taking thyroid hormone right away, so I won't "crash" with hypothyroidism even if I do need radioiodine. Basically, the current post-op routine is to go on an iodine-free diet for up to six weeks, during which all the thyroid hormone goes away. Less thyroid hormone plus low overall iodine means the remaining thyroid tissue more readily absorbs the radioiodine. This lack of thyroid hormone causes hypothyroidism, however, which entails depression, anxiety, weight gain, loss of energy, menopausal syndromes, and other not-fun things. The new treatment at the CU Hospital involves taking a recombinant thyriod hormone (meaning a human hormone made by another species thanks to genetic engineering) that allows me to avoid hypothyroidism while still making the thyroid tissue uptake more radioiodine than it would otherwise. It also will not interfere with the testing they will do to see if I even need the radioiodine, because it will not effect the levels of the protein they measure for this. Yes, that's right: I might not even need the radioiodine after all! Of course, we won't know until after the surgery.
The other great news is that the longest I would be in the hospital after the surgery is two days, where other surgeons guessed a week, partially because this surgeon can make smaller incisions and will be less invasive. Also, if I do need radioiodine, I can do it at home. Because I won't crash, I probably would only need to be isolated for 3-5 days instead of a whole week or more, too!
Over all it's been a great and very informative day but very draining! i was so glad to have Amy and my mom with me! we even made it a bit of an outing and went and got a nice diner lunch in Denver! I've been having a great but very busy week and despite my exhaustion, continue to feel better! It's been so much fun having our great family friends Kate and Ayla Satten visiting! they're such wonderful people and full of so much love and wisdom! Frankie also officially got the keys to our new Australian home yesterday! so very exciting!!! Everything seems to be turning around and looking up! We're so lucky to have so many wonderful people and blessings in our lives!
-Ghostwritten by Amy (in case you couldn't tell from all the scientific mumbo jumbo) since my brain is fried)
At first glance, the endocrinologist was unsure of the cancer diagnosis based on the pathology report from Barton in Lake Tahoe. Because pediatric thyroid nodules are cancerous 25% of the time (and they count up to 20 as pediatric for this particular cancer so I guess I kind of count) he suspected that Barton was correct, but wanted confirmation from their more advanced pathology lab. As he was saying this, the pathologist paged him about the slides... and confirmed the diagnosis. This means there is a 99% chance I have papillary carcinoma, so nothing new there.
It also turns out that they have assigned me one of the top 5 thyroid surgeons in the US, although he was in Paris for an international thyroid conference today so I have to go back and meet him on the 30th. Everyone in the office confirmed that he was the best, and the doctor said that he's who he would send his family to. The odds of my voice being affected are less than 1% with such a skilled surgeon, versus 3-5% with most surgeons, so that's good! Clearly it was worth waiting!
The best news is that because they are a teaching hospital, they can give me a post-op treatment that is still in the FDA approval process so no one else could offer it. With this routine, I won't have to be on any weird diets and I can start taking thyroid hormone right away, so I won't "crash" with hypothyroidism even if I do need radioiodine. Basically, the current post-op routine is to go on an iodine-free diet for up to six weeks, during which all the thyroid hormone goes away. Less thyroid hormone plus low overall iodine means the remaining thyroid tissue more readily absorbs the radioiodine. This lack of thyroid hormone causes hypothyroidism, however, which entails depression, anxiety, weight gain, loss of energy, menopausal syndromes, and other not-fun things. The new treatment at the CU Hospital involves taking a recombinant thyriod hormone (meaning a human hormone made by another species thanks to genetic engineering) that allows me to avoid hypothyroidism while still making the thyroid tissue uptake more radioiodine than it would otherwise. It also will not interfere with the testing they will do to see if I even need the radioiodine, because it will not effect the levels of the protein they measure for this. Yes, that's right: I might not even need the radioiodine after all! Of course, we won't know until after the surgery.
The other great news is that the longest I would be in the hospital after the surgery is two days, where other surgeons guessed a week, partially because this surgeon can make smaller incisions and will be less invasive. Also, if I do need radioiodine, I can do it at home. Because I won't crash, I probably would only need to be isolated for 3-5 days instead of a whole week or more, too!
Over all it's been a great and very informative day but very draining! i was so glad to have Amy and my mom with me! we even made it a bit of an outing and went and got a nice diner lunch in Denver! I've been having a great but very busy week and despite my exhaustion, continue to feel better! It's been so much fun having our great family friends Kate and Ayla Satten visiting! they're such wonderful people and full of so much love and wisdom! Frankie also officially got the keys to our new Australian home yesterday! so very exciting!!! Everything seems to be turning around and looking up! We're so lucky to have so many wonderful people and blessings in our lives!
-Ghostwritten by Amy (in case you couldn't tell from all the scientific mumbo jumbo) since my brain is fried)
Monday, September 13, 2010
things just keep getting better!
I just got off the phone with the Denver Medical Center! We've scheduled my surgical consult for the 30th of september and the surgery for the 8th of October! much sooner than we would have thought! it's all very surreal but exciting! It could mean i could have all my treatments done as early as November! I might even get a bit of Tassie summer after all! we're very excited this could be done so soon but it is also hitting us pretty hard that this whole thing is real! Also, in smaller news, turns out my appointment with the endochronologist there is Thursday not Wednesday. i'm really looking forward to talking to them! I've got a million questions! It's not even noon and it's already been a huge day for me!!! it's already exhausted me, but left me in great spirits!
now my mom and i are sitting on the lawn with the dogs and the crossword puzzle. it's a lovely day and all this great news has made it all the more brighter!
now my mom and i are sitting on the lawn with the dogs and the crossword puzzle. it's a lovely day and all this great news has made it all the more brighter!
Good News!
got woken up this morning with a call from the doctor. It looks like the cancer hasn't spread farther than my thyroid which is great news! and it means an easier surgery and smaller scar! also, the majority of his other tests are back, and everything! else looks normal too! all very good news! He also sounded very happy to deliver the news and wanted to stay in touch and be a part of everything that happens from here on out regardless of if we use his surgeon or not. I really liked him too so this made me very happy!
He did wake me up, so i didn't really have time to process it and ask him any questions, but he said the next step would be to schedule the surgery. the real question now is with who? I've got an appointment with the Denver medical center on Wednesday, so I'm interested to see what they say and how soon they could fit me in. They are the most highly regarded and skilled in the area when it comes to all of this, however, because of this they may not be able to fit me in for surgery or even a surgical consult for several months. Luckily, the cancer is very slow growing and as far as my diagnosis this wouldn't too much of a problem. But mentally, i don't know how long i can wait! The other doctor in town, Dr. Fox, was also a very nice and clearly a capable doctor, and i did like him too, so i think after Wednesday we'll have a better idea of what to do next as far as surgery is concerned!
I've also been feeling better over all the past few days! my throat's been very dry, and i'm still exhausted, but i don't feel nearly as sick! And i've finished off all of my "fruitilicious" gargle which has really helped! I've even made it out of the house several times in the past few days! and tonight, our close friends Kate and Ayla Satten are coming to visit!!!! I can't wait!!!
In other news, it looks like Frankie and I (and soon to be Shana) have officially got the house we wanted and Frankie gets the key Thursday! it's all super exciting! It's so hard being on the other side of the world for all this! I feel awful that i can't help out more! I'm trying to do my best to help from here as best i can. I've been searching the internet finding cheap deals on beds and furniture, and trying to organize borrowing peoples trucks and such. I just hope it's not causing more stress for everyone there!! I'm having the hardest time not being more involved with the whole thing! but i have no doubt that by the time i get back it will be a wonderful and cozy home! I can't wait!
Anyways, Amy just got here and i hear the jingling of the kitties so I better go say hi and get some kitty cuddles! we'll keep you posted as the rest of the test results and plans come in, but as far as things go, it's all looking good!
He did wake me up, so i didn't really have time to process it and ask him any questions, but he said the next step would be to schedule the surgery. the real question now is with who? I've got an appointment with the Denver medical center on Wednesday, so I'm interested to see what they say and how soon they could fit me in. They are the most highly regarded and skilled in the area when it comes to all of this, however, because of this they may not be able to fit me in for surgery or even a surgical consult for several months. Luckily, the cancer is very slow growing and as far as my diagnosis this wouldn't too much of a problem. But mentally, i don't know how long i can wait! The other doctor in town, Dr. Fox, was also a very nice and clearly a capable doctor, and i did like him too, so i think after Wednesday we'll have a better idea of what to do next as far as surgery is concerned!
I've also been feeling better over all the past few days! my throat's been very dry, and i'm still exhausted, but i don't feel nearly as sick! And i've finished off all of my "fruitilicious" gargle which has really helped! I've even made it out of the house several times in the past few days! and tonight, our close friends Kate and Ayla Satten are coming to visit!!!! I can't wait!!!
In other news, it looks like Frankie and I (and soon to be Shana) have officially got the house we wanted and Frankie gets the key Thursday! it's all super exciting! It's so hard being on the other side of the world for all this! I feel awful that i can't help out more! I'm trying to do my best to help from here as best i can. I've been searching the internet finding cheap deals on beds and furniture, and trying to organize borrowing peoples trucks and such. I just hope it's not causing more stress for everyone there!! I'm having the hardest time not being more involved with the whole thing! but i have no doubt that by the time i get back it will be a wonderful and cozy home! I can't wait!
Anyways, Amy just got here and i hear the jingling of the kitties so I better go say hi and get some kitty cuddles! we'll keep you posted as the rest of the test results and plans come in, but as far as things go, it's all looking good!
Saturday, September 11, 2010
Today is lovely - one of those perfect fall days - good football, blue skies - wonderful brunch on the patio filled with laughter and good cheer and of course excellent food! Katy is really feeling better! We are all filled with love and gratitude for today - we hope you are having a good now as well!
Friday, September 10, 2010
finally feeling better!!!
I'm feeling much better today! my throat is not nearly as soar and i'm almost out of yucky "fruitilicious" gargle! but it seems to have really helped! yay! It's been a lovely day too! I slept nice and late, had a lovely breakfast/lunch outside with my mom and the dogs and I even made it out of the house! my mom , gram and I went and saw Inception! it's a wonderful if not mind blowing movie if you haven't seen it! although i must admit it was exhausting to watch! but i had a great time! also, I got a good laugh as my mom got a parking warning for parking at a "bad angle" even though is was practically the only car in the lot! haha! then after a good rest at home, I pulled out the guitar for a few hours and wrote another song! it's so nice to have at least a little bit of my voice back!
In other good and exciting news, it looks Frankie and I got the house we wanted!!!! Frankie moves in next week, i'll I'll be joining her as soon as I can! it's very exciting! I can't wait to get back! Frankie is my hero to be setting the whole thing up without me! I honestly don't know what I'd do without her!
Anyways, now I'm sharing the couch with Maui (the kitty) and my parents watching some classic old Americas Funnies Home Videos and getting in a few more laughs before bed. it's been a good but exhausting day!
In other good and exciting news, it looks Frankie and I got the house we wanted!!!! Frankie moves in next week, i'll I'll be joining her as soon as I can! it's very exciting! I can't wait to get back! Frankie is my hero to be setting the whole thing up without me! I honestly don't know what I'd do without her!
Anyways, now I'm sharing the couch with Maui (the kitty) and my parents watching some classic old Americas Funnies Home Videos and getting in a few more laughs before bed. it's been a good but exhausting day!
Thursday, September 9, 2010
Lookin' Good (Greasy Hair Aside)
Katy is feeling a bit better today, and looks significantly happier overall. Her throat hurts less, but her neck hurts where the biopsies where taken. It looks a bit like someone strangled her, all black and blue. Etta was chilling in her carrier this morning, ready for her usual Boulder adventure, and is now hanging out at Katy's feet while she does the crossword. Most importantly, Katy can shower again today! Hooray!
The winds have died down and we had some rain yesterday afternoon, but the fire has already destroyed at least 139 homes, including several that belonged to friends. The forest service is estimating it will take at least ten days to get the fire out, and as of this morning it was still only 30% contained. Some people are being allowed back into their homes, but are being told to stay alert in case they need to re-evacuate.
Here's a time-lapse of the fire from Tuesday night.
Etta says, "bvhnnnnnnngo000000" (in case you were wondering). She loves "helping" with the computer :-)
Today, more hanging out and resting for Katy!
The winds have died down and we had some rain yesterday afternoon, but the fire has already destroyed at least 139 homes, including several that belonged to friends. The forest service is estimating it will take at least ten days to get the fire out, and as of this morning it was still only 30% contained. Some people are being allowed back into their homes, but are being told to stay alert in case they need to re-evacuate.
Here's a time-lapse of the fire from Tuesday night.
Etta says, "bvhnnnnnnngo000000" (in case you were wondering). She loves "helping" with the computer :-)
Today, more hanging out and resting for Katy!
Wednesday, September 8, 2010
endocrinologist
So this morning I had my first appointment with Dr. Fox #2, the endrochrinologist. The appointment ended up taking much longer than we had originally anticipated. After talking with us and answering our questions he took me in to get another ultrasound and after a lot of poking and prodding discovered that several of my lymph nodes in my neck also look suspicious. So after a bit more discussing and poking and prodding I got several viles of blood drawn, and another set of needles stuck into my neck for several more biopsies. so the bad news is it looks like the cancer may have spread beyond my thyroid to the glands and tissue around. The good news is my diagnosis is still basically the same and the only thing that would change would be the surgery, as they would need to take out more tissue. We won't know anything for sure until we get the results from the biopsies and blood tests back in about a week. Also we've got our next appointment with a doctor at CU medical campus in Aurora who specializes in this type of cancer treatment and it should be interesting to see what they say!
Over all it's been a very draining morning and I'm exhausted and feel like I've been beat up so I'm not exactly in the best mood. My neck was finally starting to feel better, but after all the needles and pokes I'm back in a lot of pain today. All things considered I'm actually doing okay. I was somehow unphased by all this news, but I guess I could also still be in shock... Mostly I'm just really sick of this waiting game! Can't I get better and go home and back to my life already!?
Amy has been nice enough to wait on my every need and even bring her kitties over, so I'm getting some good cuddles in! Luckily I'm out of it enough that the terrible daytime tv hasn't been too annoying yet. I really believe in the healing power of being with animals, so if there's any truth in it I'm getting major doses of kitty and doggy love as well as all the wonderful human love you guys have been sending!
Over all it's been a very draining morning and I'm exhausted and feel like I've been beat up so I'm not exactly in the best mood. My neck was finally starting to feel better, but after all the needles and pokes I'm back in a lot of pain today. All things considered I'm actually doing okay. I was somehow unphased by all this news, but I guess I could also still be in shock... Mostly I'm just really sick of this waiting game! Can't I get better and go home and back to my life already!?
Amy has been nice enough to wait on my every need and even bring her kitties over, so I'm getting some good cuddles in! Luckily I'm out of it enough that the terrible daytime tv hasn't been too annoying yet. I really believe in the healing power of being with animals, so if there's any truth in it I'm getting major doses of kitty and doggy love as well as all the wonderful human love you guys have been sending!
Tuesday, September 7, 2010
Big day
As Amy mentioned it's been a big day! not just for me but for all of the boulder area! My thoughts are going out to everyone involved with the fire, and i've been cheering on the slurry bomber planes that have been flying overhead all day! and while i hate to have had to have such a terrible thing happen it does help me put things into perspective and be really grateful for what I've got! all things considered i'm extremely lucky! and with everything else that has happened in my past, if i've learning anythings, i've learned that things will be ok!
on a lighter side, i did go get my hair cut and think i lost about 6 inches and at least a kilo of hair! my head feels so much lighter! still getting used to the way it looks but i'm enjoying it heaps! We even made it to the pet store, which the dogs and ginger(my frog) are very happy about! also gram has stopped by with a wonderful gift! she's given me an adorable headband and a great little pumpkin that screams when you press it! it's very handy as it hurts my own voice to scream, but it is what i feel like doing a lot these days! i'll try and post a photo of the new looks but i'm terrible with technology and this whole blog thing so hope it works, but sorry if it doesn't!
so, now we are all sitting on the couch catching up! it's been really nice to finally feel like i've done something with my day. although it has completely drained me! and as i'm sure you're all actually reading this to find out, i am feeling slighty better. the gargle seems to be slowly but surely working. I could barely move my neck a few days ago and now i'm begining to get movement back! and while i'm still exhausted all the time i feel slightly more rested now that i've been getting more sleep (thank you ambien!) hopefully i can continue to sleep well tonight! i'm very excited (hmmm maybe excited isn't the right word...) about tomorrow mornings doctors appointment! it's been just over a week since my last appointment with anyone concerning the cancer so i've thought up a lot more questions! so i'm sure we'll have more health updates soon!
Thankful
The wildfire that started yesterday morning continues to cloud Boulder in smoke, and is likely to keep burning for days. They estimated 3,500 acres burned by last night at 10 pm, and 1,000 homes have been evacuated. Several structures have burned, and a handful of evacuees watched their houses and/or their neighbor's houses burst into flames as they fled- the fire moved that quickly! As far as we have heard, the fire is about five miles from Boulder and unlikely to come into the city. The official name for this blaze is the Fourmile Canyon Fire.
It's a good reminder that, as scary as cancer is, we're still so lucky! Katy, Karen and I evacuated from a similarly large and fast moving fire a few years ago in Lake Tahoe, so we have a slight idea of what this wildfire is doing to people's lives. When we were there we could drive up the ridge and watch the flames, and see exactly how close the fire was getting. Not knowing is the worst, and once you've left you can't go back to look until it's out! We also had DAYS to prepare for evacuation, so we had loaded the car to capacity by the time we actually left. These evacuees had minutes to get out, and many were forced to leave even their pets behind.
Our hearts and prayers go out to those affected, and we hope that Gold Hill is spared from the flames and nobody gets hurt fighting this awful wildfire!
Today Katy is venturing out into the world to get a hair cut. Maybe she'll even have energy to go to the pet store, but we'll see.
It's a good reminder that, as scary as cancer is, we're still so lucky! Katy, Karen and I evacuated from a similarly large and fast moving fire a few years ago in Lake Tahoe, so we have a slight idea of what this wildfire is doing to people's lives. When we were there we could drive up the ridge and watch the flames, and see exactly how close the fire was getting. Not knowing is the worst, and once you've left you can't go back to look until it's out! We also had DAYS to prepare for evacuation, so we had loaded the car to capacity by the time we actually left. These evacuees had minutes to get out, and many were forced to leave even their pets behind.
Our hearts and prayers go out to those affected, and we hope that Gold Hill is spared from the flames and nobody gets hurt fighting this awful wildfire!
Today Katy is venturing out into the world to get a hair cut. Maybe she'll even have energy to go to the pet store, but we'll see.
Sunday, September 5, 2010
another day
woke up feeling about the same today. the worst part (as you can see in the picture from the other day) is just how swollen my throat/neck is! but we'll know by tomorrow morning if the disgusting yellow "fruitilicious" flavored gargle is working!! fingers crossed! i'm feeling very tender and grumpy! might have to invest in a punching bag! i've got a lot of anger recently but my parents assure me it's a sign that i'm feeling better and are being really goods sports about my grumpiness! i'm just getting very sick of being stuck on the couch and in bed all day!!! but hopefully this new medicine with get rid of my mouth infection and that should make me feel a lot better! and maybe let me feel like i have at least a little control!
apart from the obvious physical pain the absolute worse thing is all this waiting! before we make any major decisions i've still got 2 more doctors appointments and one of them isn't for another 10 days! it's all very frustrating! but after that we should have a better idea of a timeline for all of the treatment and such! i'm going absolutely crazy away from tassie and my life and not knowing how soon i'll be back! trying to organize my moving (me and my best friend frankie are hoping to move into a new house in the next month) while on the other side of the world is a nightmare! my friends over there are absolute champions to be packing my room up for me and everything on top of their own hectic lives! i honestly can't thank them enough!!!!! with any luck i'll be back there soon!!! (and hopefully with a beautiful house to move into too!)
I also can't believe how many people from all around the world have been sending me their support and love! it really means the world to me and is making all the difference! and I do feel slightly less alone in this whole thing! I've been hearing from people I haven't talked to in years! it really is amazing! and, almost everyone has a story of someone they know going through something similar! so i guess it isn't all that uncommon! you'd think the human thyroid would be built better! but I can't thank you guys enough! and i'll be soaking up all the love and support (and free smoothies!) i can in the months to come! thank you thank you thank you!
so i guess there really isn't to much new news, but i thought i'd give a quick update! this whole blog thing kinda cracks me up, and i never dreamed i'd be writting one, but then again I also never dream a lot of what's going on would ever happen to me! but now that i've actually started writing on it, i have to admit it is a good outlet! and it's a great way to let everyone know what's going on! technology is amazing!!! i hope you guys are enjoying it! and I'm loving all the followers and great comments! I love you all!
-Katy
apart from the obvious physical pain the absolute worse thing is all this waiting! before we make any major decisions i've still got 2 more doctors appointments and one of them isn't for another 10 days! it's all very frustrating! but after that we should have a better idea of a timeline for all of the treatment and such! i'm going absolutely crazy away from tassie and my life and not knowing how soon i'll be back! trying to organize my moving (me and my best friend frankie are hoping to move into a new house in the next month) while on the other side of the world is a nightmare! my friends over there are absolute champions to be packing my room up for me and everything on top of their own hectic lives! i honestly can't thank them enough!!!!! with any luck i'll be back there soon!!! (and hopefully with a beautiful house to move into too!)
I also can't believe how many people from all around the world have been sending me their support and love! it really means the world to me and is making all the difference! and I do feel slightly less alone in this whole thing! I've been hearing from people I haven't talked to in years! it really is amazing! and, almost everyone has a story of someone they know going through something similar! so i guess it isn't all that uncommon! you'd think the human thyroid would be built better! but I can't thank you guys enough! and i'll be soaking up all the love and support (and free smoothies!) i can in the months to come! thank you thank you thank you!
so i guess there really isn't to much new news, but i thought i'd give a quick update! this whole blog thing kinda cracks me up, and i never dreamed i'd be writting one, but then again I also never dream a lot of what's going on would ever happen to me! but now that i've actually started writing on it, i have to admit it is a good outlet! and it's a great way to let everyone know what's going on! technology is amazing!!! i hope you guys are enjoying it! and I'm loving all the followers and great comments! I love you all!
-Katy
Friday, September 3, 2010
Ear, Nose, and Throat Doctor Saves the Day
Papillary carcinoma is asymptomatic, but Katy's throat has still been hurting her and no one has been able to tell us why. Karen finally let go of logic, gave into her gut, and called the ENT specialist who fixed Katy's severely deviated septum and removed Amy's tonsils. He made time to see her right away, within an hour of us calling!
After fifteen minutes of gloating about how great Katy's nose is, thanks to him, Doctor L looked into her throat and diagnosed her with thrush. Apparently nobody except an ENT would recognize thrush, but he and his PA-in-training both, separately and instantly, knew what was wrong with Katy's throat. Thrush (in American terms) is a very painful fungal infection of the throat, mouth, and esophagus, which explains all of the previously unaccounted for symptoms! He's sure that the thrush is from the antibiotics; killing all the "healthy" bacteria in her mouth and throat allowed the fungus to move in and thrive.
The treatment for thrush is an anti-fungal gargle four times a day. Unfortunately it's "fruitilicious" flavored and thus extremely nasty to gargle! Fortunately, the pain should subside within 48 hours.
Dr. L also looked at the pathology report from Barton (Lake Tahoe hospital) and confirmed that the only cancer that presents this way is papillary carcinoma, which is the easiest to treat and has the best prognosis of all the thyroid cancers.
This morning Katy enjoyed a 90 minute massage that turned her into a happy blob of jelly. She is now cuddled on the couch with naked kitties all around and Dr Who on the TV. All things considered, life is good!
After fifteen minutes of gloating about how great Katy's nose is, thanks to him, Doctor L looked into her throat and diagnosed her with thrush. Apparently nobody except an ENT would recognize thrush, but he and his PA-in-training both, separately and instantly, knew what was wrong with Katy's throat. Thrush (in American terms) is a very painful fungal infection of the throat, mouth, and esophagus, which explains all of the previously unaccounted for symptoms! He's sure that the thrush is from the antibiotics; killing all the "healthy" bacteria in her mouth and throat allowed the fungus to move in and thrive.
The treatment for thrush is an anti-fungal gargle four times a day. Unfortunately it's "fruitilicious" flavored and thus extremely nasty to gargle! Fortunately, the pain should subside within 48 hours.
Dr. L also looked at the pathology report from Barton (Lake Tahoe hospital) and confirmed that the only cancer that presents this way is papillary carcinoma, which is the easiest to treat and has the best prognosis of all the thyroid cancers.
This morning Katy enjoyed a 90 minute massage that turned her into a happy blob of jelly. She is now cuddled on the couch with naked kitties all around and Dr Who on the TV. All things considered, life is good!
Wednesday, September 1, 2010
Feeding the Family
As many of you know, I cook for stress relief, and I believe that homemade meals are healing. At dinner tonight Katy, Karen, Bob and Mike all thought it might be fun if I posted what I made each day for Katy, along with recipes. In the future I'll try to take relevant pictures, too, if you like this idea.
Today I made chicken pot pie with the leftover grilled chicken from a couple nights ago. We didn't have any parsnips, so I threw in a yam. The cheddar biscuit topping really hit the spot for all of us! Plenty of veggies, too.
For dessert I made brownies with a caramel swirl, from my own recipe:
To make the caramel, dissolve 1 cup of sugar in 1/2 cup water plus a half teaspoon lemon juice over medium heat, stirring constantly. When it begins to boil, turn up the heat and stop stirring. Swirl the pan occasionally until the sugar is a deep amber color. Remove from heat and carefully pour in 1 cup of heavy cream. The mixture will sputter and hiss, just keep carefully stirring. Stir in 1/4 cup unsalted butter and 1 tsp vanilla extract, then set caramel aside.
For brownies, melt 1/2 cup unsalted butter with 8 oz chocolate chips either in the microwave (30 second intervals, then stir) or in a double boiler (stirring often). Add 3/4 cup brown sugar to the melted chocolate mixture. While that's cooling to lukewarm, sift or whisk together 3/4 cup flour, 1/2 tsp baking powder, 1/2 tsp salt, and 1 Tbs unsweetened cocoa powder. Now add 2 eggs, one at a time, to the chocolate mixture and stir until mixture becomes glossy. Stir in flour mixture and 4 oz chocolate chips.
Pour batter into buttered and floured 9" square pan. Using a small ladle, make little lines of caramel on top of the batter then drag a knife through, about once every 1/2" in both directions. Bake at 350 F for 25-30 minutes, until a knife in the middle comes out just barely clean. Cool and enjoy!
Today I made chicken pot pie with the leftover grilled chicken from a couple nights ago. We didn't have any parsnips, so I threw in a yam. The cheddar biscuit topping really hit the spot for all of us! Plenty of veggies, too.
For dessert I made brownies with a caramel swirl, from my own recipe:
To make the caramel, dissolve 1 cup of sugar in 1/2 cup water plus a half teaspoon lemon juice over medium heat, stirring constantly. When it begins to boil, turn up the heat and stop stirring. Swirl the pan occasionally until the sugar is a deep amber color. Remove from heat and carefully pour in 1 cup of heavy cream. The mixture will sputter and hiss, just keep carefully stirring. Stir in 1/4 cup unsalted butter and 1 tsp vanilla extract, then set caramel aside.
For brownies, melt 1/2 cup unsalted butter with 8 oz chocolate chips either in the microwave (30 second intervals, then stir) or in a double boiler (stirring often). Add 3/4 cup brown sugar to the melted chocolate mixture. While that's cooling to lukewarm, sift or whisk together 3/4 cup flour, 1/2 tsp baking powder, 1/2 tsp salt, and 1 Tbs unsweetened cocoa powder. Now add 2 eggs, one at a time, to the chocolate mixture and stir until mixture becomes glossy. Stir in flour mixture and 4 oz chocolate chips.
Pour batter into buttered and floured 9" square pan. Using a small ladle, make little lines of caramel on top of the batter then drag a knife through, about once every 1/2" in both directions. Bake at 350 F for 25-30 minutes, until a knife in the middle comes out just barely clean. Cool and enjoy!
Another day...
Katy's throat hurts worse today, but otherwise she feels okay. At least the Ambien allowed her a good night's sleep for the first time since this started.
Amy and Mike's little kitty, Etta, had to visit the vet today for a mystery limp. She's hairless so they could rule out punctures and abscesses pretty easily, and no swelling means fractures are unlikely. So she gets some pain medications and a week of "resting." Thank goodness the pain meds make her sleepy, otherwise there would be no chance of keeping her still! For now she's Katy's kitten-shaped hot water bottle, sound asleep under the blankets.
Gram and Laurie stopped by for a moment and brought Katy an American delicacy; Jamba Juice! All-fruit (really, non-dairy) smoothies don't exist in Australia apparently! On the TV, "Dead Like Me," and all the animals are cuddled around the couch. Sun shining outside the window, a hint of autumn in the air. Just another day.
Amy and Mike's little kitty, Etta, had to visit the vet today for a mystery limp. She's hairless so they could rule out punctures and abscesses pretty easily, and no swelling means fractures are unlikely. So she gets some pain medications and a week of "resting." Thank goodness the pain meds make her sleepy, otherwise there would be no chance of keeping her still! For now she's Katy's kitten-shaped hot water bottle, sound asleep under the blankets.
Etta Napping
Gram and Laurie stopped by for a moment and brought Katy an American delicacy; Jamba Juice! All-fruit (really, non-dairy) smoothies don't exist in Australia apparently! On the TV, "Dead Like Me," and all the animals are cuddled around the couch. Sun shining outside the window, a hint of autumn in the air. Just another day.
Tuesday, August 31, 2010
visit with GP
just got back from my second doctors visit of the day, with my primary care physician Dr. Browne. it was a very good reassuring visit. still not completely sure on why i'm still so sick, but we were very reasurred that it could very easily be simply due to my body being just over exhausted on top of still recovering from whatever terrible flu/tonsillitis or illness i had back in Tassie a few weeks ago. and just the news of the "C" word can be enough to cause a lot of stress on the body. so we we're told what we already knew in that i'm exhausted and overwhelmed, but also reassured that it was nothing to be to concerned about. the worst part other than the cancer symptoms of pressure on my throat and difficulty breathing well is simply my exhaustion. i've never been so tired in my life, yet still unable to sleep. but i've got a prescription for some sleep meds and it's great to be home. i also got some blood taken and will have a few tests done just to check for autoimmune issues or any antibodies. so it's all very good news in the scheme of things.
we've also got several more doctors appointments lined up for the next few weeks both with endocrinologists, surgeons and doctors, but we are well on the way to getting my surgery and treatments started and soon to be behind me!
on another note, i am so happy to be getting so much love and support with all of this. it is the last thing i ever dreamed would be happening to me and it still doesn't seem real. But i'm keeping optomistic and trying not to dwell on all the negative and such of it. i am feeling much much better than i was just a few weeks ago, and while i still have a long way to go, we've now figured out what's going on and are well on the way to a full recovery. I'm still going to need a lot of support in the upcoming weeks and it's scary as hell, but i know deep down it's all going to be fine. I'm so incredibly lucky to have such a big and strong support group! i love you all so much!
Katy
we've also got several more doctors appointments lined up for the next few weeks both with endocrinologists, surgeons and doctors, but we are well on the way to getting my surgery and treatments started and soon to be behind me!
on another note, i am so happy to be getting so much love and support with all of this. it is the last thing i ever dreamed would be happening to me and it still doesn't seem real. But i'm keeping optomistic and trying not to dwell on all the negative and such of it. i am feeling much much better than i was just a few weeks ago, and while i still have a long way to go, we've now figured out what's going on and are well on the way to a full recovery. I'm still going to need a lot of support in the upcoming weeks and it's scary as hell, but i know deep down it's all going to be fine. I'm so incredibly lucky to have such a big and strong support group! i love you all so much!
Katy
Background: Why is Katy in Colorado again?
Katy lives in Hobart, Tasmania, Australia, so why is she back in Colorado, USA? It started out as a bad cold, maybe strep throat. The doctors in Hobart put her on antibiotics, but she did not get well. Next, they thought maybe glandular fever was to blame, but the test came back inconclusive. Whatever was wrong with Katy, everyone agreed, a bit of R&R would do her a world of good. Plus, she was too sick to do her laundry or make her own meals, and needed some extra support.
Three weeks ago, Katy flew to San Fransisco, where her parents met her and drove her back to the family cabin in Lake Tahoe, CA. If nothing else, a couple weeks of sleeping in the sun would feel good! When two weeks into her stay Katy was still getting sicker, they took her to Urgent Care. The doctor suspected something else was going on, and ordered an ultrasound. The ultrasound revealed what looked like two nodules on her thyroid. Hypo- or Hyperthyroidism would explain her symptoms, and if the nodules were responsible they could do a simple procedure, aspirate the nodules, and Katy would get better quickly!
Unfortunately, the biopsy revealed that it was one big nodule instead of two. The pathology report suggested papillary carcinoma, the most common type of thyroid cancer. With the big "C" word suddenly thrown in their faces, Katy and Karen threw everything in the car and hurried back to Colorado to figure out what to do next!
The good news is, papillary carcinoma is considered curable, with a 10-year survival rate of 98.5% for women (100% for patients under 45 years old). Treatment is black and white: The thyroid is removed, and a few weeks later a dose of radioactive iodine (radioiodine) is administered to kill off all remaining cells. No tissues except the thyroid can metabolize iodine, so only thyroid tissues will uptake the radioiodine and thus only thyroid tissues will be affected by this treatment. Since any metastases will also be made of thyroid tissue, no matter where they are in the body, the radioiodine will destroy all of these secondary tumors as well. There is very little chance of her have any metastases to begin with, but if there are any this treatment will deal with them!
The bad news is, thyroid cancer is usually asymptomatic and Katy is still sick! So, there are some more doctors to be seen before the cancer can be treated... Luckily this is a very slow-growing cancer and there is no rush!
Three weeks ago, Katy flew to San Fransisco, where her parents met her and drove her back to the family cabin in Lake Tahoe, CA. If nothing else, a couple weeks of sleeping in the sun would feel good! When two weeks into her stay Katy was still getting sicker, they took her to Urgent Care. The doctor suspected something else was going on, and ordered an ultrasound. The ultrasound revealed what looked like two nodules on her thyroid. Hypo- or Hyperthyroidism would explain her symptoms, and if the nodules were responsible they could do a simple procedure, aspirate the nodules, and Katy would get better quickly!
Unfortunately, the biopsy revealed that it was one big nodule instead of two. The pathology report suggested papillary carcinoma, the most common type of thyroid cancer. With the big "C" word suddenly thrown in their faces, Katy and Karen threw everything in the car and hurried back to Colorado to figure out what to do next!
The good news is, papillary carcinoma is considered curable, with a 10-year survival rate of 98.5% for women (100% for patients under 45 years old). Treatment is black and white: The thyroid is removed, and a few weeks later a dose of radioactive iodine (radioiodine) is administered to kill off all remaining cells. No tissues except the thyroid can metabolize iodine, so only thyroid tissues will uptake the radioiodine and thus only thyroid tissues will be affected by this treatment. Since any metastases will also be made of thyroid tissue, no matter where they are in the body, the radioiodine will destroy all of these secondary tumors as well. There is very little chance of her have any metastases to begin with, but if there are any this treatment will deal with them!
The bad news is, thyroid cancer is usually asymptomatic and Katy is still sick! So, there are some more doctors to be seen before the cancer can be treated... Luckily this is a very slow-growing cancer and there is no rush!
First Surgion Visit
Today we visted Dr Richard Fox, a surgeon who specializes in thyroid surgery. He was very nice and seems very competent. He did an additional sonogram and found a very large nodule on Katy's right thyroid. It is currently pushing her trachea to the side. He advised she have her whole thyroid removed but indicated that there is no great rush as thyroid cancer is fairly slow growing. He also recommended that she see her primary care physician to figure out why she is still so sick - as thyroid cancer has no symptoms other than the lump. Katy is seeing Dr. Browne this afternoon. We will keep you posted.
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