Lab Rat

So ok, I realize I haven’t done an update on how I'm doing physically in a while. Mostly, there hasn’t been much to tell… Last week I got my labs drawn to check my calcium and my Dr hasn’t called to tell me I can back off on the Tums yet so it must not be normal yet. I plan on calling next week to see if I can start tapering the dose and/or if I need another level drawn soon.

Today I got my labs drawn to check my thyroid stimulating hormone (TSH) and I hope to hear about that on Monday. We need it to be at 30.00 or higher in order to schedule my pre-ablation WBS, radioactive iodine ablation, and post-ablation scans with Nuclear Medicine. They won’t even consider talking with you until you get to that point. I’m feeling positive that my TSH has been rising because I've been experiencing hypothyroid symptoms more acutely this week. I’ve been sleeping 12-14hrs/day, hair is falling out regularly, I've stopped feeling like I have hot flashes, and have stopped running a constant temp of 99F+ (that was annoying for over a week).

Yesterday and today I've been COLD. Yes, I know the weather has cooled a bit but I live on the 3rd floor, have my windows shut, layers of 3 shirts and 2 blankets and my hands and feet cannot get warm. I probably should try some socks too but I like the barefoot freedom of summer and its not officially fall… yet! I’ve also started getting the stupid body aches and headaches… and my mom and dad think I'm not making much sense or remembering things they told me so there goes my cognition! (sorry if the blog doesn’t make sense in the next couple weeks! lol) I have noticed it’s harder to concentrate on anything for more than a few minutes so its a good thing I'm a list-maker!

Other than that, I'm hot on the trail for sugar free lemon drops – I have to eat one every 15 minutes when going through RAI for the first 48hrs, even waking every couple hours overnight to eat them. The sugar ones can make you nauseated (hazmat team needed) and the increased acidity of saliva caused by the RAI is hard on teeth so adding sugar into the mix means cavity city. The parotid glands also tend to have swelling and blockage issues after RAI so having these on-hand to stimulate salivation is key. I also need to remember to buy baking soda to do rinses several times a day to neutralize some of the acid. The stuff I have is OLD and I'm NOT putting it in my mouth!

Still trying to figure out what to do after RAI too but all will be clear in time I guess! I’m not worrying too much about it until I know when it will be, hence why I'm praying my TSH went up, uP, UP!

Go With The Flow

Had another doctor's appointment today with my surgeon. He's a cool guy so basically he came into the room and said "So... yeah, you already know what to expect so i don't have much to tell you!" LOL I have had this surgery before (left side) so I know what to expect pain/recovery wise after surgery. I know I will be hooked up to an IV with fluids until I can eat solids and that nurses will come into my room at 3am to make me hit my cheeks. (muscles there will twitch if my parathyroids were damaged causing my calcium levels to plunge) I also know to avoid Vicodin completely. He said he will be making my scar more symmetrical (oh thanks!) and that he will actually cut away the current scar tissue in order to have a cleaner, new scar. He did feel my neck again and then decided to do another ultrasound to make sure things looked the same. He said the right lobe still looks disease free (no nodules) but that there could still be microcarcinomas that don't show up on tests.... so basically we decided to proceed as originally planned. (anticlimactic, I know)

So I asked him some questions... I always have questions! My TSH was drawn on Friday and he said that turned out to be 0.34 suppressed which is right where I should be (0.3-0.5) so my daily thyroid hormone dosage is good. I asked him if the lymph nodes appeared to be fine and he said we won't know for sure until after my scans but they aren't concerning at the moment. Then I asked him if I would have a nuclear medicine or radiation oncology doctor do my RAI and he said it would be a nuc med Dr and that I would have a consult with him a few days before my scans/RAI. I told him i've been reading the research and it says I have an increased risk of breast cancer, couple that with my family history, I wanted to know if it would be a good idea to get scheduled for a baseline mammogram - he said yes, that would be a good idea... I asked him a few more questions and I believe I have a good estimate of a timeline...

The Flow:

• Pre Surgery - Call my PCP to get a Mammo ordered and performed (yay fun)
• September 1st 8:30am - completion thyroidectomy performed, stop all thyroid meds
• September 2nd - go home still off all thyroid meds, this time with no thyroid at all
• September 2-October 2 (approx) - be off thyroid hormones to go hypo, currently my TSH is at 0.34 (which is almost hyperthyroid for normal people) and I need it to get to 50.00 (10 times more hypothyroid than the almost hypothyroid normal people). This takes approximately 4-6 weeks and you feel like total h-e-l-l as all your body functions slow to a crawl.
• September 8th - post-surgery appointment & stitches removed
• September 20th - start the LID, hopefully this only lasts 2 weeks but this again depends on my TSH levels.
• October 4ish - Hopefully levels will be high enough to meet with the Nuc Med doctor and schedule my tracer WBS for a couple days later (low dose of RAI)
• October 6ish - tracer dose WBS to check for thyroid cells still in the body - this will be the first time we will be able to find out if the cancer spread to lymph nodes or elsewhere
• October 8ish - get 100-150 mCi dose of I-131 (radioactive iodine) - unsure at this point if I will have to stay overnight to protect the safety of the public from my radioactive cuteness. No seriously, I will be emitting gamma rays sorta like X-Rays at not so safe levels.
• October 8-15ish - the isolation period. I can't be anywhere near children or pregnant people and have to be at least 3-6ft away from all others and only for very short periods of time. I have to suck on lemon drops for the 1st 24-48hrs to keep the radiation from burning my salivary glands. I have to pee every hour for the first 24-48hrs to prevent it collecting in my kidneys and I have to flush twice after each use. If I vomit they have to call the hazmat team!
• October 10ish - get a post-RAI WBS. This one should show what the 1st WBS did, except the very high dose of RAI will make it much more sensitive in showing any possible mets.
• October 11ish - I can start taking my thyroid meds again - YAY!
• November 22ish - check TSH levels. Goal: 0.3-0.5. Continue checking levels every 4-6 weeks if not in the goal range. It can take months after going so hypo to get your levels back to the goal range.

So that's my life for the next couple months in a nutshell - any questions?