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)