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.

Isolation Station

This is my new slogan for the week… or really pretty much since surgery over a month ago… Staying In is the new Going Out. Yes, I have the t-shirt thank you very much.

Today I happen to be feeling much better for the first time since last Wednesday. Not feeling normal yet, but I hardly remember what normal feels like so I'm just happy to not be fighting nausea for 98% of the day! Yesterday I started back up on my thyroid meds and even though it will take about 2 weeks for my TSH to start dropping into a more acceptable range I'm so glad that I'm finally on the way there.

I’ve had some questions about where I'm staying during my isolation period so I'll tell you I'm in an extended stay type hotel with a mini kitchen area and such. No maid service to radiate, brought my own pillows & comforter & towels & food… trying to keep the kitties and the hotel staff safe from my radioactive waves. For those of you who find this radiation thing to be a little far fetched, I'll give you the snapshot of my homeland security card – the one that will get me out of interrogation at the airport when I set of their radiation detectors for the next months. I was told to have this card on me at all times as it gives details about my treatment and contact numbers for verification. Anywho, back to the isolation room… Here are some more shots for your enjoyment.

You can see I was was watching an ANTM marathon on my hotel TV which is sitting next to my own personal TV. Odd I know, but with no TLC, Lifetime, A&E, 5 Discovery Channels, my DVR… I decided I needed my DVD player which wouldn’t hook up to the ancient hotel TV. So my wonderful parents brought me a TV that would work! I’ve also had a couple flower deliveries since “moving in” that have helped brighten the days.

So I guess that’s about all I have for today! For those curious what I ate as my first meal – it was the BK followed by dinner of grilled chicken and mashed potatoes from KFC. Since then I've had pizza, salsa from the Dungeon, toast with butter, Dutch cream curls, and ramen noodles. I know it sounds super nutritious but I've only been concerned with what will stay down. When I get back home is when I will actually start eating more normally in part because I will have my pantry, fridge, freezer, pots/pans, oven… Oh and I can’t wait until I can get my hands on some popcorn at the movies! I have missed that salty, buttery goodness…sigh… Oh and actually going out to see a movie would be nice too!

NOT Fun

I’ve had many calls/emails/FB/posts/texts asking me how I’m feeling now that I “glow in the dark.”  In one word: SICK.  Looks like my first 24-48hrs of this will be all about trying NOT to throw up.  If I do, I have to call the hospital immediately.

At first I felt ok, but after a couple hours the nausea started to set in.  Now it won’t go away.  I’m supposed to be sucking on lemon drops every 15mins but those make me feel sicker so I'm popping one as often as I feel I can.  I’m supposed to swish with baking soda every 30mins but that is dis-gust-ing so I'm doing that as often as I feel I can.  I’m supposed to be drinking [and going] twice as much as normal, but I can hardly stand to eat so I'm drinking as much as I feel I can.  My salivary glands are very sore and swollen so I'm massaging and putting a heating pad on – that is one thing I can actually stand to do at any time [yay for small victories!].

Other cancer patients and their families are advised “If it sounds good to the patient when they are feeling nauseated, give it to them because that is probably the one thing that will stay down.”  NOT me!  I wanted pizza last night at 10pm that was a big fat NO. [Mom said so!]  I’m resigned to oatmeal and rice cakes and chocolate zucchini bread – the same things I've been eating since September 18th – until Saturday 1pm. 

I do have to toot my own horn a bit and say I'm very proud of myself for NOT cheating on the LID, not even a little.  Granted I started a little earlier than expected because of the scheduling mix up and I was not total LID the weekend of my cousin’s wedding [Sept 19-20] but since then…

Oatmeal w/ brown sugar and cinnamon	bow tie pasta w/ homemade pomodoro sauce [v.good]
Rice cakes w/ Peanut butter and bananas	Flowering Teapot

On a more positive note, flowers were delivered to my “isolation station” today!  No pics yet but ich war sehr suprised und glücklich!  They were from “Gpa 09” [yes he did sign the card that way!]. My grandpa is about the sweetest thing ever – Thank You!

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)

Gettin’ Dosed!

The surgeon’s office called this morning to tell me that my TSH was 35.67 and that my Nuclear Med stuff has all been scheduled! I will be getting my tracer (scan) dose of RAI on Tuesday and have my WBS, Consult, & Ablation dose RAI on Wednesday! Stop the bus – WHAT?! I’m not ready!!!

Everything I had heard said that it was hard to get into Nuc Med so expect at least a week lead time – guess that isn’t so at SH! Needless to say, I still have to figure out where I'm going to go for isolation, I haven’t been on the LID, and I have a wedding out-of-town to go to this weekend so I feel like there is no time to prepare or start cleansing my body of iodine! I have to believe that this is His timing and not mine… and that everything is going according to His plan…

So here is the timeline:

• Tuesday 22nd 6:45am (about 1/2hr-1hr) – head to the hospital, get my tracer dose of RAI, go home.
• Wednesday 23rd 6:45am (ALL DAY) – head to the hospital, WBS at 7am (2hrs), consult with Nuclear Medicine Dr. to discuss scan results and RAI dosing at 1pm, sometime in the afternoon receive my ablation dose of RAI.
• Wednesday 23rd – Tuesday 29th – ISOLATION
• Wednesday 30th (??) – Post-Ablation WBS – this one hasn’t been scheduled yet.

After this is all done, I can start back on the thyroid hormone meds and start bringing myself out of this extreme hypothyroid state (expecting TSH in the 60-80’s by RAI time). I expect for this to take about a week before I feel normal-ish again.

So I'm currently a bit stressed. Being gone this weekend for the wedding is making things a bit more stressful too. I have a lot to do & prep before Tuesday but I'm sure that everything will work out.

At least my hair will stop falling out sooner, right? Its been getting pretty thin so I was starting to worry!

Is That True?!

I’ve found myself saying or thinking this exact thing so many times over the past few days. If any of you have gone through or know someone who has gone through a cancerland journey, maybe you can relate to the confusion that happens when you start reading up on a particular disease. One study says this another says that… several studies say this but overall the medical community doesn’t endorse those thoughts… With so much science and research out there you would think there would be more concrete answers! I guess it goes to show the awesome wonder that is the human body.

Some of the questions I have been asking myself (and the Internet research engines) if they are true:

• Can RAI really kick you into premature menopause?
• Can getting pregnant (in the future) kick up a recurrence of my cancer?
• Do most young people with one primary cancer get another primary cancer? (I personally know 4 women for whom this is true)
• Since my tumor had burst, did the cancerous cells spread out all over the left side of my neck?
• Does the LID really work to increase the effectiveness of RAI?
• Will my hair stop falling out? (it isn’t as bad as having chemo but every time i touch my head, i come back with hair in my hand)

There are a lot more i’m sure, I just can’t think of them now! They tend to pop in and out all day…

Quick Update

Still waiting on results of the mammo. If i get a phone call today or tomorrow that is not good news... if I get a letter in the mail by sometime next week, that means all is normal. I'm hoping I get the letter before my completion surgery on Tuesday so I have at least a little time to enjoy the negative films!

Other than that... trying to get things wrapped up at work and taken care of at home before being off for the next 6 weeks or so.

Work has been absolutely crazy lately because we've been working through a "shared service" arrangement with our downtown group. Basically this means integrating my department with downtown's coding department. It was a loooong period of discussion where I wanted to make sure that we would all have jobs and that the transition would be mostly smooth for everyone. I was sure that my girls would all have jobs but was actually more concerned they would cut out my management position for a while! Talk about anxiety... going through cancer treatments and worrying about loss of income and benefits! Thankfully we are all keeping our jobs and I will not be transitioning until after I get back from my surgical leave so it doesn't disrupt any of my benefit coverage. Again thankful that I work for a great company with wonderful people! We have our full info/paperwork meeting this Friday so it will be interesting to see the new compensation packages offered... Then during all of this we have 2 audits going on - barf! These are the least favorite part of my job! I hate having to defend WHY we coded a patient a certain way because sometimes things are subjective and always there are thousands of rules to remember. I'm getting things done before I go so I don't worry while i'm off and i'm trying to set up my girls with a solid plan so they aren't so disrupted by my absence. Right now there aren't enough hours in the work day and i can't stay over because of the hours i need to use in my personal day! I'm excited for the surprise potluck the girls have planned for tomorrow to wish me good luck...at least i think it was supposed to be a surprise! Oops! LOL

So on to everything else i need to get done... I did laundry this past weekend (had to after not doing it for 3 wks!) but I still have to put it away - UGH! I need to unload/load/run the dishwasher, clean out the fridge, dust, vac, and just put everything away. If I don't get this done before surgery it won't be the end of the world but it will drive me nuts when i can do nothing but sit and stare at it all day! I also want to make a list of the books I have to read and decide what order i'm going to read them in... i think i have 20 or so in the lineup. I need to get my pics printed from 3 Day 2008 so I can work on my scrapbook when i'm bored or can't concentrate to read. I need to find some LID compatible recipes for bread and pasta sauces so I can find people to make me some ;) Oh and I have to get a water filter, yoga DVD (know any easy ones?), and thermometer! I will probably have some paperwork for the merger mentioned above to complete. Oh and this weekend I have a meeting at Gilda's Club, a wedding shower out of town, church... Monday i'm actually working but may decide to work from home so I can cut out my hour drive and work on my to do list instead. Everyone thinks i'm nuts for working on Monday but if my first day of my surgery leave is the day I stay overnight in the hospital, I don't have to use 40hrs of my PTO before my leave pay kicks in - crazy!

So that's basically the peek into my mind at the moment... i'm a bit scattered so i'm sure this post reads that way too! Any suggestions/thoughts/comments on any of the above?

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!!

Get Hip To The Lingo

So most of you know I love, love, love to abbreviate things that I talk about all the time so I thought i would share some lingo that may be helpful when reading my posts and helpful for me so I don't have to remember to type out the whole thing!

1. PT - partial thyroidectomy, lobectomy, hemithyroidectomy - this is the surgery where they take half the thyroid, usually reserved for very small tumors and benign nodules. Having a PT usually means you are on a low dose of thyroid hormone medication to keep the remaning side from working too hard and making more nodules/tumors.
2. TT - totaly thyroidectomy - this is where they take out the whole thyroid gland and sometimes the parathyroids. Having a PT means you must be on thyroid hormone medication for the rest of your life because your body will [should] produce none. This is usually reserved for more serious thyroid disease and larger and/or multifocal tumors.
3. WBS - whole body scans - done with a small amount of radioactive iodine, this scan can show areas of thyroid cancer metastasis (spread).
4. Mets - metastasis - means the cancer has spread
5. Pap - papillary cancer - this is a well differentiated type of thyroid cancer that is considered more treateable than some of the other types such as medullary & anaplastic.
6. Levo - levothyroxine - the generic name for the thyroid hormone medication taken daily
7. Hypo - hypothyroid - this means you have extremely low amounts of thyroid hormone working in your body so your thyroid isn't working or you aren't on enough meds. There are lots of unpleasant side effects to this such as: hair loss, extreme fatigue, extreme sensitivity to cold, pale complexion, dry skin, low pulse, pain & stiffness in your muscles and joints, depression...oh yeah and the ever popular weight gain! Basically ALL your body processes slow waaaaaaaay down.
8. Going Hypo - going hypothyroid...on purpose - thyroid cancer patients must "go hypo" before getting a WBS to check for METS [like how i started the lingo talk already?]. This means you need to be off all meds for 4-6 weeks to become extremely hypothyroid so that the radioactive iodine used in the scan will uptake better in the thyroid/cancerous cells.
9. LID - Low Iodine Diet - in addition to "going hypo" thyroid cancer patients will be treated to the LID for scans and radiation therapy prep. On the LID you can have no: Dairy, shellfish & anything from the sea including sea salt, seaweed..., eggs, red dye #33, just about all pre-packaged foods, soy based items, molasses, some beans, potato skins, rhubarb and.... chocolate! This diet is pure torture made even worse by the fact that you will be experiencing all the effects that being hypo can cause.
10. RAI - Radioactive Iodine Therapy - this is pretty much what it sounds like. Thyroid cancer patients are unique in that we usually don't get the standard types of chemo or radiation - we get this combo of a chemical that is radioactive. We either swallow a pill or drink of a large dose of radioactive iodine. This makes us literally radioactive for about 7-10days. Because of this radioactivity we must be isolated from people and animals - sometimes in the hospital where even the doctors and nurses can't come in the room until the guy with the geiger counter comes and says you are no longer a danger to the general public. During this isolation time, you must wash your sheets & clothes every 24hrs, eat off disposable utensils, flush 3 times after "going", spit into the toilet, shower 3 times a day, oh and suck on lemon drops hourly for the first 24-48 hrs among other things.

I think that's a good start - now study! There will be a quiz! :)