radioactive once again

Still waiting on the actual scan, but I thought I'd let everyone know how it was all going. So far everything is going really well! I've been on the iodine free diet which is luckily not too tough in Boulder with all the options for fresh organic produce. I've been extremely lucky to have my mom and sister and the rest of the family baking and cooking and over all spoiling me as well! Monday and Tuesday I got my injections of the thyroid hormone suppressors. Two very easy if not slightly uncomfortable shots in the bum. I've been pretty lucky and only had a few side effects of nausea and headaches. Over all nothing too terrible and much better than a month of being severally hypothyroid but still not particularly fun.

Today I went in for the small dose of radioactive iodine. It was a much smaller dose than my last one and is actually a different isotope so none of the radiation will actually stay in my body or kill any disease but it will get taken up by any if there's any left in there. This way in case I dont have any more cancer cells I dont get any unnecessary radiation. It also means I dont have to be isolated which is really nice! It was a very surreal experience getting the radioactive iodine. They took me back into a small room and a woman with big gloves came in with a big metal thermos with big "radioactive substances" and "nuclear medicine" stickers on it. Then she opened it up and poured 3 rather large pills into my bare hand, handed me a cup of water. I swallowed them and that was it. Very easy.

Tomorrow is the full body scan as well as several pictures and scans of my neck and chest. It will be boring more than anything. About 2 hours of laying as still as possible in one of those oh so fashionable hospital gowns, but it will be great to have it over and done with! I think the hardest part will be having to wait a few weeks before we get the results.

Other than that things are really great and I've been enjoying my extra week in America. We've been decorating the house and with all the snow on the ground it's really feeling like the holidays! It's been wonderful to get to spend so much time with my wonderful and amazingly supportive family! I am so so so lucky! It's hard to believe I've been back almost six weeks! Saturday I fly back to Australia and I am extremely excited to get back! It will be very nice to get back to my life and friends again and finally get some summer.

I'll keep this up to date with anything new that happens but chances are we wont know anything new for at least a week or two. I hope everyone has an absolutely wonderful holiday and a new year full of great joy and good health! I for one am hoping for an easy and quiet year to come.

follow up... good and frustrating news

I've just returned from my endocrinology appointment and have received both good and somewhat frustrating news. They seemed very happy with the way the surgery went and my overall thyroid hormone levels are great and the antibody test came back negative. All very good things! However, My blood tests still show a very small amount of thyroglobulin. This indicates that some desease my still be present. It's important to note that it is a very very small amount (only 0.2 and they can't detect anything lower than 0.1) especially in comparison to my blood test before surgery (which was 2.9) and does very little to change my overall prognosis. However, it does mean I am now staying an extra week in America to do a body scan which will decide what my next course of action will be. We already knew that I have a very agressive form of this cancer so in some ways being able to find and treat it now is one of the best outcomes.

I am getting what is called a thyroglobulin stimulated whole body scan. Basically its just a very small dose of the radioactive iodine followed by a scan to see if any of it is taken up by any cells or if my thyroglobulin levels rise. There are three possible outcomes. The first is that the scan shows an uptake of the radiation and a rise in my levels which indicated there is more desease but it will absorb and can be treated by another dose of radioactive iodine which we would then schedule for the next few months. The second possible result is that there is no uptake of radiation but my thyroglobulin levels rise which will indicate a very small amount of desease may be left, but it most likely will not be fully absorbed and treated with more radiation and we would simply keep an eye on it and continue with another ultrasound in 6 months. And the third possibility is that there is no uptake and my thyroglobulin levels changes very little if at all which indicates there is no desease left! All three options are very straight forward to deal with, but fingers crossed it's option three!

I've had to once again go on an iodine free diet starting today for the scan. Nothing with any meat, dairy, salt or that has been processed at all. Luckily Boulder has great fresh produce so one week of it wont be too hard. I will also have to go to Denver every day next week for the whole process. The first two days I will get shots which will surpress my thyroid hormone and trick my body into thinking it had no iodine in it which will help insure the uptake of the radioactive Iodine. This will also allow me to not have to go off my meds like I did for the the full radioactive iodine treatment which is great since it means less side effects and less feeling yucky! Then on Wednesday I will get a very small dose of Radioactive Iodine and Friday I return for the scan. But we're planning some fun activities in Denver so we'll make it as much of a fun adventure as we can!

So it's not bad news, but still very frustrating! Other than that however, I am doing pretty well. I had a suture come out near the top of my scar but they cut it out while we were there today and didn't seem at all concerned. I am feeling better and better every day and have almost had all of my range of motion return in my neck and shoulder. Still very weak and tender, and I'm not allowed to carry anything heavy or anything for a while, but the muscles seem to be stretching out which is a very good sign. I had a wonderful vacation to mexico last week which was fantastic and I believe a huge help in my recovery! A really great distraction and a good chance to hang out with family more! I am so lucky! It wore me out and I am still extremely exhausted, but I'm in good spirits over all if not a bit frustrated. It will probably be a few more weeks until I'm %100, but I am taking advantage of being able to relaxe and take things slow. I know not to get my hopes up too much, but if all goes well I'm hoping to be on a plane back to Australia by next weekend and enjoying a relaxing, stress free summer!

Post op

So i've had a very busy but good day! I had my post op and everything went very well! They removed the drain and seemed very pleased with my recovery! It feels really great to have the drain out! I've also been given some neck and shoulder exercises to make sure my muscles recover well and don't tense up or anything. It's really wonderful to be able to finally lift my arm over my head and I have almost full motion of my neck and jaw! The only weird thing is that half of my neck and ear are still numb. The doctor explained that there are a lot of nerves in that part of the neck that were no doubt disrupted during the surgery. It will most likely take a while until I regain feeling again. He also said sometimes the nerves never fully repair and that is nothing to be concerned about either. However, it's a very weird feeling so I am hoping I gain at least some of the feeling back.

The pathology reports also came back and they were pretty much what they were expecting which is good news. Out of the 37 lymph nodes they removed only 4 came back positive for cancer. Very reassuring! We'll find out a bit more about what the next steps are when we meet with my endocrinologist in early December, but for now all I have to worry about is relaxing, recovering and enjoying my time back home!

Over all my recovery is pretty amazing! Hard to believe I was in surgery less than a week ago! The scar is already fading into my neck and with the drain gone I'm only scaring away half the amount of children I was just a few days ago! My voice is tired but seems undamaged which is a huge relief! I've even started singing and playing my ukulele and writing songs again! I'm still pretty exhausted, but I'm starting to get cabin fever from sitting around so much and very ready to start getting back into the swing of things again!

It's been a crazy year reflecting back on everything that has happened, but I feel very lucky all things considered and with how incredibly showered with love and support I have felt throughout this whole ordeal! I feel extremely spoiled! I've already started getting birthday wishes from the other side of the world for tomorrow! (I could really get used to this whole two days of celebrating!) Also, my parents are amazing and have offered to buy me an electric Ukelele for my birthday so I spent the afternoon trying different options out and singing and playing music! It's been wonderful! Tomorrow I'm looking forward to a big family dinner with heaps of my favorite people and ridiculous amounts of my favorite foods! I am so luck and I am still riding on the high of it all!

p.s I think it's only fair to warn anyone who reads this that as I recover more the updates will probably be less frequent. But I think we can all agree that no news is good news in this case! I'll be sure to update with any new information I get and there will be a few more updates before I return to Australia again. I will also keep this blog active for my 6 month check up and any other relavent events, or if anyone has any questions or anything. It has been such a wonderful communication tool. I really can't thank you all enough for everything you have done for me! Every kind word, thought and gesture has been felt and deeply appreciated! I can only hope you can feel my deep gratitude and love for you all in return!

my new battle wound!

Freshly showered and feeling a lot better! Here's my impressive new scar! But if you think that's bad, you should see how beat up the shark was!

recovering back home

I've been back home a little over a day now and despite being a little woozy from pain meds I'm feeling pretty good so I thought it would be the perfect time for a quick update. Sorry in advance if it's a little disjointed.

Thank you Amy for the wonderful update yesterday as I was a bit too out of it to write a very coherent entry. It is so good to be home and I have been enjoying lots of love, amazing food and a ton of sleep. Despite having to sleep sitting up I slept pretty well last night and it was really great to back in my own bed. I did wake up several times to hear my dog scratching on my door pathetically but apart from that I slept pretty hard. I woke up this morning in a bit more pain, but it was mostly my shoulder muscles and after a gentle massage from my mom and several more pain meds I feel a ton better. After breakfast I went back to bed and slept all morning. I've just woken up again to a wonderful lunch of bagels (and yummy leftovers, thanks Brad!) and a cute scene of my brother in law Mike asleep on the couch with the cat on his chest. Very cute!

I've been getting more and more mobility with my shoulder and I've been doing some stretches the doctors gave me which have helped a lot too. The most painful part is my shoulder muscles, but I'm beginning to even be able to move my neck which is a big help. The grossest part is my drain, but even that is looking less disgusting. The weirdest part is that my neck from my collar bone to halfway up my ear is completely numb on the left side still. I keep getting an itch on my ear, but since I can't feel myself scratching it, it just keeps itching. It's very weird! I've also had a bad reaction to the adhesives they used on me so I have lots of red itchy welts from where ever they stuck anything too me which is a bit uncomfortable. But I get to take my big bandage off today which will feel really good! It also means I finally get to see my scar which is kind of exciting! But I have to admit I'm most excited about the fact that I get to shower this afternoon! It's going to feel so good!

Other than that everything is pretty good. My appetite has been surprisingly big and I have had no lack of delicious food! My amazing sister Amy has been spoiling me with copious amounts of delicious options! She even cooked a full chicken meal last night complete with mashed potatoes, stuffing and gravy! Delicious! And I've got endless supplies of entertainment thanks to ridiculous American TV, My parents new blue ray player and the millions of shows and movies I have on my hard drive (Thanks Mark!) And the fact I can't keep my eyes open for more than an hour at a time help insure I don't get bored by anything too quickly! I also just had a quick but fantastic visit from my aunt cindy and my little cousins! I'm sure it's not easy for them to see someone with a big gross bandage on, but I got some good hugs and beautiful paintings! I am so lucky to have such wonderful people looking after me!! I feel extremely spoiled!

Ok I am starting to feel my pain meds kick in and I think I'm rambling now, I think its nap time again so I can rest up for my shower! I really can't thank you all enough for all the support and love! It makes all the difference!

Back home

Mike and I drove up to Boulder today to help out with Katy's return home.  She was discharged before noon, and home in time for some scrambled eggs and apple strudel.  Katy spent most of the day on the couch watching TV and napping, but she looks really good!  All the doctors were very impressed by how little swelling there is, her Ca++ levels are fine, and her drainage is lightening up.  She's tired and sore, but that's to be expected.  I'm sure she'll update herself in the next couple of days.

All of the supportive and loving messages being sent our way are greatly appreciated!  Thank you all for keeping us in your thoughts and prayers; we're lucky to have such amazing family and friends!

out of surgery!

Hey guys! I'm a bit woozy and doped up so I'll keep this short but wanted to let everyone know I'm doing well! I've been moved to my own room and I've even kept down half a sandwich! I'm surprised by how well I feel actually, I'm tender but not in much pain, my shoulder isn't too stiff and I haven't had any issues with nausea from my meds! I've also had such an amazing support team and such lovely people looking after me which has been a huge help! I had a wonderful dream while I was out that I was running up and down the beach with my two dogs (who were both much younger and healthy) while my late grandfather sat on a park bench eating a slice of cherry pie and watching us.

On a more medical note, although they removed more than the obviously diseased lymph node, the rest appeared pretty normal , but we'll find out more about them when the lab results come in next week. Also, the head of Endocrinology came by and cleared a few more things up for us. She explained that their main concern at the moment is my calcium levels. Last year during my surgery they had to transplant my parathyroids which are what controls calcium, and since then they seem to be working fine but I have been on the edge of low calcium levels. Their concern is that any swelling in my neck could affect these glands and they're ability to function properly. This is why I have to stay in the hospital for at least the night so they can monitor me since sudden calcium deficiency can make me extremely ill and is potentially life threatening. She also mentioned that I will most likely have to have another dose of radioactive iodine, but that wont be any time soon.

Thank you all for all the love and support! It's been really amazing and helped keep me is great spirits! I'm so glad to be moving forward and to have the surgery over with! I'll do a further update tomorrow when I'm hopefully less groggy.

Out of Surgery!

The doctor just came out to talk to us.  Katy is out of surgery, waking up in PACU.  Everything went great, he was smiling tell us how well it went so that's always a good sign!  He said things couldn't have gone better!  All her nerves are fine, so her voice shouldn't be affected.  The lymphoid they were concerned about was very obvious, and they went ahead and removed the surrounding glands as well.  We should hear back from pathology next Thursday, which is also when she'll get the drain out.  Apparently they were all listening to her ipod while prepping for surgery, and they put her headphones on her now that she's waking up so she can listen to her "affirmations" playlist.

In Surgery

As of 10:15 am mountain time, Katy is almost in surgery.  We arrived at the inpatient pavilion at 7 am and were promptly led back to pre-op.  Karen, Bob and I got to stay back there with her while all the different doctors and nurses came by to check her information and get her ready for surgery.  Everyone here is so friendly and wonderful!  Gram and Laurie joined us back there and Gram helped Katy get into a very relaxed state.  After a couple hours, the nurse anesthesiologist came by and gave Katy her first dose of happy drugs, and wheeled her away.  We all feel like Katy is in the best possible hands, and will keep the blog updated as we learn more!

Update: pre op

Hey everyone! As most of you probably know I'm back in Colorado again for more treatment. Thought this was still a great way to keep everyone up to date on everything.

When I was last home in July a check up with the doctors discovered some remaining desease in one of my lymph nodes, and while that sounds nasty it is still pretty straight forward to treat so I am currently back to get it removed. I've got my surgery scheduled for tomorrow at 9am and earlier today I had my pre op and thought it would be good time to update everyone on all the details.

They are planning on removing all of the lymph nodes on the left side of my neck just to be safe. This will include an incision that will probably over lap my last scar as well as go farther along the left side of my neck and possibly up towards my ear in the shape of a "hockey stick." The surgery is about as invasive if not slightly more so than my last surgery and should only last about 3-4 hours. I will probably have to stay the night in the hospital and on the gross side I'll get to have a drain in my neck for a week. The biggest chance of complications are the fact that in order to remove the nodes they have to move some of my neck muscles out of the way and then back again. This will effect my shoulder at least short term and will be a more painful recovery than my last surgery. Another possibility is that I may loose feeling in that part of my neck either short term or permanently. The other more serious side effects are if they hit a nerve as the main nerves in that part of the neck control the vocal folds, the tongue, the shoulder muscles and the diaphragm. However, none of these would be at all life threatening and there is only a %1 chance of this occurring. And with such a skilled surgeon I like to think my odds of any of that happening are even less!

On the bright side I have the most amazing doctors and surgical team and I have no doubt in there abilities. They all seemed extremely prepared and optimistic. The doctors also cleared up some of my confusion and fears about the diseases reoccurrence. I was concerned of it's return as I had understood that the radioactive iodine I took this time last year should have killed all of it. However they reassured me that that should have killed any remaining thyroid tissue as well as having the best chance of killing any cancer cells that may have spread to other parts of my body such as my lungs and bones. So there is very little chance of there being any cancer in other parts of my body which is very good news. However, apparently lymph nodes are much harder to penetrate with radiation, but they are one of the easier locations to remove through surgery so it is nothing to be too concerned about. They also made it clear that I am extremely lucky to be so young and that while it may have slightly raised my chances of it reoccurring again, it has not changed my mortality rate at all. All very good and reassuring things to hear!

I also want to give a huge thank you to everyone who has been so amazing and supportive throughout this whole ordeal. I could not have done it without you and you're love and support! It really means the world to me! I love you all so much and can't wait to put this all behind me and move forward! I also hear 11/11/11 is one of the luckiest and most spiritually connected days of the century so I can only take that as more good luck! All things considered I've had a pretty amazing year and I'm looking forward to continuing that!

I'll probably be pretty out of it, but you can keep an eye on this blog for updates from my family throughout the next few days! :)

results!

Hey everyone! As most of you know, I had a lymph node biopsy last week. I just got off the phone with the doctors and It is positive. But while that sounds bad it's actually in some ways good news. It means that it is operable, they know exactly where it is, and it probably hasn't spread beyond that area so it should be fairly straight forward to deal with. Unfortunately they can't fit me in for surgery until September at the earliest. But the doctor and Surgeon had a consult and decided that it wouldn't be bad if I waited until the end of the semester and came home in November for surgery as an option too since it is slow growing and probably wont spread.

It is all a bit of a blur and is still setting in, a bit frustrating not be able to deal with sooner, but at the moment we are looking at flights back to Australia for me and with any luck I should be back down under and in school by the end of the week! Hard to believe by this time next week I'll be back to my life in Tassie, going to classes and hopeful keeping myself occupied! What a wild ride!

follow up

Hey everyone!
so I know it's been a while since my last post, but I've just had my 6 month follow up and thought this would be a great resource to continue to keep everyone up to date! The past 6 months for me have actually been great! i've been recovering wonderfully and been able to return to pretty much everything I'd been missing out on and my voice is really starting to get back to where it was with my singing!

However, I am back in Boulder for the week to get a follow up and make sure everything is as it should be health wise. After several days of tests and ultrasounds I've just returned from Denver with somewhat frustrating results. the good news is that all of my levels seem pretty good and I only need a slight medication tweak. Bad news is that in the ultrasound, one of my lymph nodes looks suspicious. Also, My thyroglobulin levels also seem to be a bit higher, which isn't necessarily a bad thing, but it shows that there is probably a small amount of diseased cells still in there as well.

What this means is that the next step is to get a biopsy to confirm anything. If the biopsy is negative I will fly back to Australia for my second semester of classes and return to Denver in 3 or 4 months for a body scan just to double check everything. (unfortunately since it's the 4th of July weekend i wont be able to get my biopsy until next week so I'm already missing my scheduled flight back to Australia, but we've decided to let that go and not worry about the time frame as my health is the number one priority right now)

If the results are positive, I will most likely get another extensive surgery (woohoo more cool scars). This time on the side of my throat instead of the center around where my thyroid was. luckily the wonderful surgeon who did my previous surgery is still the best guy for the job and sounded very willing to work around my schedule to get it done! THey also made it clear that they would be sure to not only remove the lymph node but fully "clean out" that area of my throat to insure nothing would be left behind! They probably wouldn't do more radioactive iodine any time soon as that can linger and I probably still have it in me a bit. And if that last dose didn't kill it they can't garentee more would make a difference at this time, and they dont want to have to expose me to any more of it than they have to!

Luckily both scenerios are still a stage 1 in cancer and have very promising prognosis! so, although it still sucks, things could be a lot worse and there are still plenty of things I can do and the odds are in my favor! And things still look optimistic for me to return to Australia and even take semester two classes (although I may miss the first week or two)

Over all it's been a hard day, but I am so lucky to have so much support! and my horoscope promised a 5 star day! so although I got told the cancer might still be there, a bird pooped on me, I spilled my lunch all over a poor hospital worker, and I found out i'm allergic to hazelnuts (no more nutella :(),I can't imagine what it would have been like if it was only a 3 star day! And at least I get more time in the beautiful Colorado summer with my beautiful friends and family!

I'll be sure to do my best to update this with any news we get and I really appreciate all the love and support!

Katy