Radioactive Iodine Therapy (RAI) – The Basics and Day 1&2

After being told I would need a form of radiation, even in a pill form, I was scared to death. Don’t these people know I’m only 28!!! I know Cancer knows no age but how is this even happening? I talked to my mom about it a little because she did a little more research and she gave me a very generic overview before my meeting with my Endo just until we knew the extent of what we were dealing with. But, of course, I decided to look things up on my own (on reliable websites only) to see what the step-by-step process would be and this would be much worse than I originally thought. Am I comparing this to someone that has to go through chemo – absolutely not! Am I comparing this to someone that has to go through outside radiation – again, absolutely not!!! But to a 28 year old mother of 2 who just recently married the man of her dreams and finally got her life on track – this was devastating.

I will be given a tiny pill that will cause me to be isolated from my family and friends for a 48 hour time period one time and a week a couple weeks later. I’ve heard so many people that have told me already to “treat it as a vacation” but that’s the last thing I need or want. This is such a scary time for me and I want nothing more to be surrounded by family and friends. I have to keep a 3 feet distance from everyone at all times. I have to sleep in a separate bedroom from my husband during this time. Only coming around others for up to an hour at a time. I have to use my own bathroom and no one else. No hugs, kisses or close contact during this time. I can’t prepare food for anyone else and no one else can touch my clothes or sheets….or me. How lonely is it to feel this way, even for a short amount of time? I know that I have been more needy than I have ever been in my life and part of me hates it but I know that everyone understands it. I will be poked every day with needles to test my blood to see how quickly this radiation is sinking into my body so they make sure they don’t give me too much to wear it soaks into my bones and kills my bone marrow or permanently damages my liver or another organ. I know this is very temporary thing for permanent fix but just a lot to take in and a VERY emotional time.

So basically doctors recommend RAI over any other type of treatment because it’s the most effective on destroying both cancerous and non-cancerous remaining thyroid tissue left from surgery, with the minimal effects on the rest of your body. This will hopefully lessen the chances of reoccurrence of regrowth later in life. I have to say that my Endocrinologist sent me to the #1 Thyroid Cancer Hospital in the Nation so I am in VERY good hands. But with that being said, my sister-in-law, Meghan, volunteered to drive me to each of my appointments to ensure I didn’t have to go to my appointments alone or have to face DC traffic by myself. I am so thankful for her as it takes approximately 2 1/2 hours to get to the hospital ONE WAY and that is using the HOV lane. I can’t imagine what kind of traffic I would be dealing with without her. Not to mention with my anxiety attacks as bad as they have been, especially on the road. And to my Mother-in-law who has been watching all these crazy kiddos so Meghan and I can get to and from these appointments!! Throw a few snow days on top of it to make it that much more interesting – seriously, thank you and love yall both!

So I was officially off of work starting 2/16 to start all my scans, blood work, daily appointments, etc. In order to start treatment, my doctors had to determine if I needed to withdraw from my Thyroid hormone – which is much, much harder on the body as you often feel the extreme symptoms of hypothyroidism. I know people that have had to go this route and have said they feel absolutely horrible and can’t even get out of bed. The other option is to take two shots, two days in a row called a Thyrogen shot in the butt. This raises your TSH levels to “trick” your body into raising your levels while you are still on your Thyroid hormone. Day one I felt no side effects but Day two it definitely caught up to me as I could barely keep my eyes open and had a severe headache lasting for over a day.

Another update to talk about day 3-5 tomorrow….

Post-Op Appointments

My first post-op appointment was with my surgeon and just 7 days after my release from the hospital. I really felt great about seeing him and even better about getting out of the house again. The only other time I saw this office since surgery was to have my drain removed 4 days prior (all 12 inches of it pulled from beneath my skin – pretty disgusting!!!). I also saw my Endocrinologist the next week just to do another follow up on my Thyroid medication and discuss my pathology report again.

My surgeon just went through everything again as to what he did – as we all know, I was a bit out of it after surgery and on a few pain meds so I may not have remembered a few minor details pertaining to my surgery haha. My surgeon and Endo both clarified that things were a lot worse than they initially thought. They knew that there was a lot of lymph node involvement but not to this extent. They removed 56 lymph nodes – 7 from the center (front of my neck, over top of my thyroid) and 49 on the left side of my neck (much deeper than initially thought and had to clamp my neck muscles back longer to remove them). They also thought I was only a stage one – just a little background info, if you are under the age of 45 with Papillary Thyroid Cancer, there are only 2 stages of Cancer. After my surgery, they determined that my surgery was more advanced than originally thought and officially staged me at Stage 2 instead for multiple reasons. Because the amount that it had spread already already, in additional to the type of aggressive tumors located in the actual thyroid. They found 7 nodules (or tumors) in the Thyroid and they were called multifocal – which are actually uncharacteristic of Papillary.

Now with each of these appointments, as you would expect, it was extremely overwhelming. My Daddy came with me to my Surgeon appointment and Mom Brady came with me to my Endo appointment. Thank God for that – I swear, I with each of the appointments, I’m only able to digest the first 5 or 10 minutes of information then it takes the next 24-48 hours to let the remaining fully sink in. That’s the combination of talking it out with the other person(s) with me, thinking about it, telling my Hubby on the way home, then sleeping on that night then BAM – that’s when I feel like it all finally comes together. I was just told I have aggressive tumors and Stage 2 Cancer. HOW? I’m 28 years old. I have 2 babies at home. And I still want more with my Hubby who want to pass his name on himself. Did she say I needed Radiation? Oh wait – she said I needed Radioactive Iodine Therapy which is much easier on the body. Oh goodness. After each of these appointments I always have  at least one good cry – you know that ugly cry that everyone has (you know what I’m talking about – anyone ever listen to Dane Cook haha). And this is when that happens, when it all hits me a day or two later when it just hits me and it’s so overwhelming.

So my next step will be to have Radioactive Iodine Therapy but I needed to wait a minimum of 6 weeks after surgery. So my next post will be dedicated to what is involved in the process and how this will help my recovery process. 🙂

Low Iodine Diet (LID)

Low Iodine Diet. If you were anything like me prior to my doctors appointments and research, you have no clue what this means. But as of this past Monday, my life has revolved around this diet because it’s what is needed prior to my Radioactive Iodine Therapy (on March 4th). I’ll go more into to the specifics of that in my next post.

With the LID the following are NOT allowed:

• NO Dairy products of any kind (milk, cheese, yogurt, butter, ice cream)
• NO Bakery products containing iodine (this means pretty much all breads except a select gluten-free or homemade breads)
• NO Iodized salt, sea salt, and any foods containing iodized salt and sea salt
• NO Red Dye #3 (this is sometimes put in your ground beef or red candies)
• NO Seafood or sea products
• Most chocolates (due to the milk content) are not allowed. Some medications containing iodine need to be discussed with your physician as well.
• Basically nothing with preservatives.

With the LID the following ARE allowed:

• Fresh Fruits (except rhubarb and maraschino cherries)
• Fresh Vegetables (or Frozen with no salt)
• Unsalted Nuts
• Whites of Eggs
• Only Fresh Meats (up to 4 oz daily)
• Sugar, jelly, jam, honey, maple syrup (but good luck finding something for them to go with haha)
• Black pepper, fresh or dried herbs and spices

So with all this being said, you will lose a lot of weight on this diet – I have lost 4 pounds in a total of 4 days and that’s not even trying to lose weight. That is suffering the first couple of days and being miserable. I had a melt down the first day (that was this past Monday) because I didn’t want to go to bed starving – a little dramatic, I know. But that was after I had just made the kiddos some chicken Alfredo pasta and I was just huuuuuuunnngry!! I love fruits and veggies but I need something else to get me through the day. I’ve never been one to “diet” because I never ate super unhealthy but in the last 4 years I’ve gained 45 years and never could lose the weight so I kinda just gave up. This has definitely done the trick.

It definitely takes a lot more planning in a sense that I went through my “Low Iodine Cookbook” that was provided to me from the Washington Hospital Center and found a few meals that looked good. I planned out a few meals from it and made sure that I had everything in the house when I was ready and had the energy to make it. I was a little worried because I am definitely NOT a cook, can barely follow the directions, and easily lose track of time.

One of the first recipes I tried was meatloaf (which I have never made myself) and I haven’t eaten since I was in school. I did have to call my mom to help decipher the recipe (once again, I didn’t get that cooking gene). It was easy enough for me to get it done and it came out a little bland for my Hubby but tasted like a million bucks to someone that had been living off of oranges and salads for a couple days. My second recipe was stuffed peppers and I have to say they were amazing!! I did get some help from my Hubby because I was making two batches (one for him and one for me without iodine) and just couldn’t keep up. But I have to say it’s so much better having a full belly!!!

This is definitely a tough thing to do but no doubt such a small party of our journey in comparison to what we have faced!!