Thursday, December 8, 2011

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!

6 comments:

  1. Uncle Pete....I've got seven to one on option 3 and is taking odds at 20 to one!

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  2. Kiersten.....you are awesome no matter what!

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  3. Gram...we are going for option #3!!!!

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  4. Auntie Cindy....Katy....thank you so much for this very detailed....understandable explaination of this unbelievable "thing" called cancer. Of course we are all in tears of happiness that you are so very well and sadness and frustration that there may still be questions about cooties still in your body. You and your families realistic perserverance to just do what needs to be done....and make it as fun as possible is so inspiring and a great model. Thank you for being so wise and helping us in so many ways....so sorry you have to do the diet thing and go through the paces...wishing you wonderful music and beautiful moonlight nights to comfort, support and inspire you....or whatever you need or want...big hugs and lots of love!!!!!!

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  5. Dear Katy, Thank you for explaining so thoroughly what is going on. It helps me to focus my good thoughts more exactly. I'm sorry you didn't get a completely perfect report. I continue to be so impressed with your positive attitude. I know that is helpful for your healing. It sounds like you have great and very thorough care from your doctors and family. Many good thoughts are coming to you from your Reno family. We're certainly rooting hard for option #3. Are you writing any music about this experience or is it a bit too close to do that yet? Much Love, Becky

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  6. how's it going....? AC st thomas gang

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