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?

Gratitude

I am grateful that my place finally sold and that the buyers wanted to me to be out quickly, causing me to move when I did.
I am grateful that I had to move into an apartment where the grass gets mowed, repairs are done for free, and I won't have to shovel in a few short months.
I am grateful for the aching muscles that came from hauling things out, up, and in.
I am grateful that when trying to rub out a kink in those aching muscles, I noticed a lump at the base of my neck.
I am grateful for a doctor who came in on his day off to see me after the urgent care said I needed follow-up within a couple days.
I am grateful for the referral to an experienced surgeon who said the lump needed to come out because it was pressing on my carotid, esophagus, and trachea - even though he thought everything looked benign.
I am grateful for his skilled hands that did the biopsy painlessly and removed the lump very carefully from my neck and recurrent laryngeal nerve because he knew my voice was important to me.
I am grateful for the experienced eyes of the pathologist who recognized that something just wasn't right about the cells under the scope.
I am grateful for the experts who were able to confirm what the pathologist discovered.
I am grateful for doctors who listen to my fears and recognize the fact that I can indeed be an active participant in my healthcare plan.
I am grateful for the various support systems, websites, books out there available to young adults dealing with cancer.
I am grateful for my parents and my friends who have listened to (& read!) my thoughts, fears, and triumphs because they are making this easier to deal with.

Hello Blister, I've Missed You!

Went walking for the first time in months with Lindsay, Vanessa, & Heidi. My trusty blister "squirt" decided to show up for the occasion too!

I don't know how to express how good it felt to finally have a day where my energy level felt like it was back to normal! It has been so frustrating wanting to do what used to be no big deal, to plan on doing it, only to find that by 3pm I can hardly think straight because the extreme exhaustion has set in. Most nights I drive home from work and pass out on the couch while trying to muster up enough energy to get up and check things off my to-do list...

I'm sure friends are sick of my backing out at the last minute but I hope they understand that I just can't do it. I really want to be out there with them doing things that were normal for me once upon a time. I hope that in 6mos my energy returns and training next year will be no big deal...

Guinea Pig

I was reading about advances in thyroid cancer treatments and really, there have been few to no changes since the 1950's! Apparently, the scientific community found something that worked pretty well so they figured why fix it. Well, with the emergence of more aggressive thyroid cancers and RAI resistant strains, there are more and more research projects out there. Most of them deal with advanced (with distant mets) or non-RAI avid (doesn't uptake the radioactive iodine) types but there is currently ONE clinical trial out there for stage 1&2 papillary thyroid cancer. There are 2 locations running this trial - Bethesda, MD and Washington DC and both are currently accepting participants.

So why am I thinking about this? After all, its basically like being a human guinea pig or donating your body to science before you are gone, right?

Well, let me tell you some small details of this trial. They are doing RAI therapy in small doses (30mCi instead of standard 100-200 mCi) given with small doses of Lithium. I know that the RAI is "safe" and I know that the Lithium is "safe" and of course the placebo pill is safe. So this isn't involving some new, crazy drug. Apparently, the docs believe that the Lithium increases the uptake time and sensitivity of the RAI so the body isn't exposed to so much radiation. The lower dose of radiation has less risk of side effects...and if the small dose doesn't kill off the cancer, you can get another dose.

So it seems there are a lot of good points to this one and I could be helping future thyroid cancer patients. Anyone have thoughts to ponder on this?

The LID

As my completion surgery date approaches, i've been thinking a lot about the recovery period and the prep for my WBS and RAI. One part of that involves going hypo for the scan as well as being on the LID. (that lingo post should be coming in handy right about now!) There are a few things that worry me about this period...being ridiculously tired, not being able to drive, losing hair (not as bad as chemo, tG!)... will I be able to function enough to make all my meals from scratch? So far all I have pre-prepped is a few containers of broccoli frozen into single serves and homemade fruit sorbet. Pretty much everything in my pantry currently will be off limits as well as the little bit I have in the fridge.

Here are the "rules" of the diet... if anyone has recipe suggestions please post em!

Avoid Completely:

• Iodized salt & Sea salt
• Seafood & sea products (this includes seaweed, kelp...goodbye sushi!)
• Sea based additives - carrageenan, agar-agar, algin, alginate, nori
• Dairy products in all forms (butter, whey, ice cream, milk, cheese...)
• Egg yolks or foods containing whole eggs
• Commercial bakery products
• Red Dye #3 (basically avoid any brown, red, orange processed foods)
• Chocolate (for its milk content, cocoa powder and some very dark chocolate is ok)
• Molasses - sulfur or blackstrap kinds, also brown sugar containing molasses
• Soybeans and most soy products (soy oil and lecithin are ok)
• Beans: red, kidney, lima, navy, pinto, and cow peas (all others are ok)
• Rhubarb and potato skins
• Iodine containing medicines, vitamins, & food supplements
• Restaurant, Fast, Manufactured & Processed foods - take a look at your labels, nearly everything contains salt and you can't guarantee it was non-iodized

Limit:

• Fresh Meats/Poultry - 5oz per day - make sure not injected with broths
• Grains & Cereals - 4servings per day
• Rices - iodine content varies widely depending on the region where it was grown. Basmati rice is best for LID.

A-OK:

• Fresh fruits and fruit juices
• Vegetables - preferably raw, fresh cooked or frozen (not canned)
• Unsalted nuts and nut butters - no JIF for me :(
• Grain/Cereal in moderate amounts
• Meats & Poultry in moderate amounts
• Sugar, jelly, honey, maple syrup, & unsulfured molasses
• Black pepper and fresh or dried herbs
• All vegetable oils. Salad dressings if they have only allowed ingredients
• Homemade foods
• Cola, diet cola, lemonade, sodas (with no red dye #3), non-instant coffee, tea, beer, wine, & other alcohol.

Ok, so do you have ideas? I'd love to hear them!!