You’ve Come A Long Way, Baby!

Four years.  Four years.

It’s been exactly four years since I took my I-131 radioactive iodine treatment for my papillary thyroid cancer. My oh my, how my life has changed since then!

I’d like to say I haven’t given cancer another thought since that day, but truth is, I think about it every day. Every morning I wake up and take my thyroid replacement pill first thing and wait an hour before eating or drinking anything that might affect the absorption.  During my pregnancy my daily dose was changed 5 times to meet the increasing demands from my body and from Maddie. Since her birth 2 months ago, my dose has been changed twice as my body readjusts to my “new normal.” Without this one little daily pill, I would slowly go more and more hypothyroid and eventually my mind and body would shut down.  I would be so screwed in a zombie apocalypse scenario.

I have just one more year until I can say I’ve been cancer free for the magical five years = cured mark.  In this upcoming year, I have plans to undergo a whole body scan once my daughter is weaned.  Once again I will have to go hypo on purpose.  Once again I will have to take some RAI and go into isolation for a short time – this time from my husband and daughter – to protect them from my radioactive self.  Hopefully this time nothing shows up on the scan in my thyroid bed or in my lungs.

If I think on it too long, it terrifies me. So I try not to let my mind go there.  I have a long life ahead of me – including seeing my great-grandkids grow up – and I'm positive there are many adventures awaiting me!

Brrrrr…

Fall. Its usually my favorite season of the year but where the heck is it this year?! Winter was ridiculous with 2ft of snow followed by 10 inches of rain in the same week, spring was nonexistent, summer barely hit the 80’s and now fall… its currently a windy, cloudy, balmy 35F. Seriously?! The reason I like fall is because the temps are perfect [read: 60’s] and the trees are beautiful and we usually have more sun than clouds. They are teasing me with promises of 50’s maybe next week, maybe we will get some sun with that too? I’m not holding my breath because after all, I live in Michigan and snow is not unheard of in just about any month.

Cutting Through the Fog

After weeks of being very deep in Hypo Hell and having the most ridiculous brain fog [see also: chemo brain]… for a few hours today I found myself with lots going through my mind!

That may not seem like an exciting [or good] thing to most people, but literally I feel like my mind has been a barren wasteland for weeks. Day in and out I thought of nothing, could concentrate on nothing, could comprehend nothing. I had all this wonderful time on my hands to plan fundraisers for the 2010 3-Day for a Cure or plan trips to visit Lacey in CO or Eva in Germany or work on my scrapbooks or simply email/call/text friends but I literally could. not. think!

Today for about 3 hours I was able to cut through the fog enough to make lunch, worry about my WBS results [coming Thurs or Fri], respond to emails in my personal account, contact HR & my bosses about going back to work next Monday, looked up my dentist appointment time, make a grocery list, almost make plans for a movie with Slaglm [forgot to look up times! oops!], asked my dad if they ever sent Chad & Allison’s wedding card [this was 4 weeks ago & my dad laughed at my memory coming back], sent out an email reminder to those interested in joining the 3Day team… and then I literally passed out for 2.5 hours until my mom called and proceeded to ask me if I was ok because I sounded out of it.

Too Much, Too Soon

I decided to make my first foray back into the public today [aside from Dr’s offices that is] by going to breakfast with my family and then grabbing some groceries.  According to my hospital issued isolation precautions this was ok but just in case we made some extra precautionary plans to avoid pregnant people and kids for lengths of time.

From the moment I woke up I knew it was going to be a tough day.  You see, I haven’t slept more than a couple hours at a time for days now but last night I fell asleep around 12:30am and then slept straight through my alarm an extra 45mins.  When I realized how late it was I had 15mins to get ready before my parents picked me up! [note: still not able to drive]  I was feeling the exhaustion down to the very center of my bones.

We went to breakfast and afterward, mom asked if I needed anything from the store.  Of course I did because the only food I had in the house was LID friendly [nightmare] or was the normal random odds and ends that don’t make up an actual meal.  So I told her yes even though all I wanted to do was curl up in a ball in bed.  We grabbed things at the store and my mom said I was looking pale so she knew it was time for us to go.  We had to make one more stop for my kitties [food] but then they took me home.

Sounds like a crazy big exciting day huh?  Apparently it was for me.  The exhaustion is ridiculous and there is simply no way to explain it to its depth or breadth.  My entire body hurts.  My neck is throbbing and I can’t lay down because of the interminable reflux.  I could go on and on complaining of various symptoms but I won’t.  I will just say at the moment I'm completely miserable and I hope that I can sleep again tonight.

Worst part of today?  I didn’t even enjoy my breakfast because I can no longer taste anything.  Another one of those “no side effects” side effects from the RAI.

Sigh…

Today was my 1month post-surgical check.  He liked the way my scar was looking [much better than the 1st surgery] but said it will probably get pinker before it starts to fade.  AOK with me - ‘tis turtleneck and sweater season after all!  I told him about my experience with the RAI and he seems to be the only Dr that wasn’t surprised to hear of the “no side effects” side effects.  I am scheduled for a whole body scan tomorrow morning and he said I can call him next week for the results.  He also said I need to come back in another 6 weeks for a follow-up and another neck ultrasound and that we will check my labs again to make sure my meds are the correct dose.  He also said I don’t have to keep taking my calcium supplements much longer.  Right now I'm on 1 Tums twice a day.  If you remember, I started out at 2 Tums 4 times a day after surgery because of injury to my parathyroids.

So then we turned to the topic of when I can go back to work.  I said I was thinking that after 2 weeks of being back on my thyroid meds, I should be good to go.  Dr seemed a bit hesitant and said I would still be exhausted and coming out of hypo hell at that point because my TSH is extremely high.  I bargained with him and said I could work from home when I was feeling the exhaustion and he agreed to write me the note!  So I'm set to return on October 19th as I originally planned! 

Here comes the sigh…SIGH…

If you have seen me over the last year, you know that last year I worked very hard to lose 25-30lbs over the summer.  I was feeling better than I had in a few years [aside from unexplained thyroid symptoms].  Over the holidays and such I had gained back 5-10lbs but still felt really good.

Before	After

Well since the start of this whole thyroid cancer mess in May, I have successfully gained back all but 5-10 of those hard lost pounds. What really sucks is in just one week before my RAI, I gained 10lbs!!!  Seriously?!  At that point I was eating less than 1,000 calories a day. Basically my TSH went so high that my metabolism became non-existent and all of my body functions slowed to a ridiculous point.  There were days when I didn’t even feel hungry because what I ate the day before was still there.  Yes, some of it is water retention and swelling from surgery, hypo hell, and RAI and when my TSH gets back to "normal” my metabolism will return to “normal.”  But you can bet your bippy the weight isn’t just going to magically fall off. [Another thing to liken to pregnancy?] I know that I can lose it again but I also know it is going to be a long, slow climb back to “normal.”  Thank God I haven’t sold/donated any of my bigger clothes yet!

The Doctors Say…

There are no side effects to taking this radioactive pill into my body… apparently they have never taken it themselves. 

I took my scan dose of radiation this morning and they had to give it to me in 4 pills!  They explained they had to give me the pediatric dose pills because they have had trouble getting the adult doses.  They used to get this from Canada but their nuke plant has been down for the last 6mos so they now have to get it from a plant in South Africa… I’m thinking is this stuff that dangerous that we don’t even make it on US soil!?  Apparently, yes.

So I took my pills like a trooper and I swear, even if the pills have no affect on normal people they completely enhance the effects of hypothyroidism.  Since taking them, I've been nauseous, feel extremely weak, fatigued and headachy, and absolutely cannot get warm. 

My hands, nose, and feet are literally like ice cubes and everything else is covered with 2-3 layers of clothing as well as 2 blankets!  I know I need to try to eat something solid but I barely got down a small bottle of organic fruit smoothie (yay for getting 3.75 servings of fruit/veg!) and frankly, being on the LID leaves little appetizing options that don’t take long to prep.  Right now my best options are air popped popcorn with no butter and a small amount of non-iodized salt or organic unsalted brown rice cakes with natural, unsalted peanut butter and banana slices.  Yummy. I’m thinking I should go with the rice cakes because the PB would give me some protein and the ‘nana would get me to almost 5 fruit/veg servings for the day.

Anyway, trying to muster up the strength to make some food and pack for my isolation location.  I’ve pretty much slept all day and will most likely eat and then sleep again for a while so maybe I can pack during the commercials of Glee, Mercy, Toddlers & Tiaras… and whatever other shows I'm DVR-ing tonight ;o)

Bored, Bored, Bored

The title pretty much says it all!

I’m bored of being cooped up in the house all day with no one visiting… bored of my stupid LID… bored of the repetitive TV shows… bored of the internet (gasp!)…

Dreaming of the moment I can eat real food again…

My brain isn’t working right so I can’t focus enough to read books, attempt to scrapbook, organize fundraisers, or even remember if I took my Tums 2 hours ago (no joke). I can’t even finish a sentence without losing a thought or forgetting an important detail!

My parents and Grandpa came by last night to restock my LID approved food stuffs and after not being able to find unsalted/unbuttered/no soy involved popcorn, they decided to buy me an air popper instead! So now I have the ability to make some popcorn to watch movies but I am a total disaster in the kitchen at the moment too!

I have over a week ahead of me where the hypo symptoms will continue to get progressively worse and then I go into complete isolation for 7-10 days… I think I just may go completely nutso by that point!

Good Day

Today was a good day :) Time flew by at work, there was no phone call from the mammo peeps, i've given my prearrival info to the nurses and have a surgery time of 8:55am on Tuesday, we had a yummy potluck at work (with super yummy brownies!), and I got my good luck/get well soon gift from the department! The girls had gotten together and decided a handmade quilt would be better than flowers and they were SO right! Various people worked on it and it is absolutely beautiful! While I go hypo i'm sure I will be cold as my body functions slow so now I have a warm and beautiful quilt to wrap up in! I am so blessed to have such wonderful friends and coworkers!

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!!