RAI (Radioactive Iodine) Treatment Dose

Finally, the day came for my RAI ablation dose in May and the start of my experience being a glow bug – you don’t actually glow but some people term it like that as you are radioactive! I was given 152 mCi’s (millicuries) of Radioactive Iodine. It can come in either pill or liquid form, just depending on what the hospital uses. While in the nuclear medicine department of the hospital I was given the radioactive material in liquid form. I drank it through a straw which was encased in this very heavy metal container and here is an example of what it looked like:

RAI through straw

 

After swallowing the liquid I walked out of the hospital trying to keep away from people as much as possible and my parents drove me home with me in the very back seat of their SUV, as I needed to be away from them as far as I could.

I had to be isolated from everyone for three days. I pretty much only went between the bathroom and the bedroom as I didn’t want to expose my parents to the radiation, even though I was told it was safe to be at an arm’s length distance from them. I thought that it was best to err on the side of caution. It was a lucky thing that my parents had a basement area with a separate bedroom and bathroom. I was nervous about what side effects I was going to experience after having received the radiation. Some of the side effects that I experienced was that I felt more tired than usual and had a metallic taste in my mouth which lasted for a few weeks. I know many people have had salivary gland issues and lucky that I didn’t experience any problems with that during and after the isolation period; however, I did ensure that I was drinking plenty of water and that probably helped a lot.

To pass the time during the isolation period, I would watch movies on my computer, read some books that I was able to finish and slept a lot afterwards as I felt extremely tired. My parents would leave my food outside the door. After about one day of that I was starting to go stir-crazy! When the isolation period was over I felt like I could finally breathe and it was wonderful feeling the fresh air outside. I remember after the isolation period, having to really scrub and clean everything very thoroughly. I finally started to feel a little more human again after I was able to stop the LID and start taking my thyroid meds again which were a few days after the isolation period was over. Did I ever celebrate being out of isolation with a crab dinner at Red Lobster and it felt like the most amazing meal I have ever had! It was about ten days after having the ablation dose that I was given the whole body scan on May 11, 2011; moreover, I did not like that scan one bit! The plate comes within about two inches from your face. I felt as though I couldn’t breathe; I am very claustrophobic and do not like closed in spaces. They had to pull me out a few times and finally they just covered my eyes and then I was able to get through the scan. The scan did not show any residual disease. About two weeks later my docs released me to go back to Japan. Was I ever glad to be going back home to Japan to see my husband and children.

 

Preparation for RAI (Radioactive Iodine) Therapy

hazard-poison-radioactive 2

Fast forward to mid-April 2011…… we now have a plan in place to finally do RAI. The endocrinologist explained about the LID (low iodine diet) and the requirements for isolation. I looked on the ThyCA (Thyroid Cancer Survivor’s) website for information on the LID and found a cookbook which was a lifesaver for me! I started prepping ahead by making meals and freezing them. I had to be on the LID for two weeks before receiving the RAI.   Once again I developed another sinus infection and unfortunately since I am prepping for RAI, I can’t even do my normal sinus rinses due to the ingredients in the rinse as it can cause a problem with RAI. I was feeling so horrible during this time, but at least my doc was able to give me some meds which helped to clear up the infection some.

While I was prepping to receive my RAI treatment, I was able to occupy my time with a few things while I was staying at my parents. I created a scrapbook of various newspaper clippings of all the events of the Japan Earthquake – something to remember what happened. In addition, going to the gym was another thing to keep myself busy. It was hard for me having to rely on other people, and felt like I was being a burden to my parent’s in having to take me to doctor appointments, taking me to the gym every day and so forth. To solve that problem or alleviate that a bit for them and me I went out and bought myself a bike. I am very independent and don’t like relying on other people as I like doing things for myself. It was great as I would ride my bike each morning to the gym, but it was actually another added bonus as a way in getting more exercise into my day. I loved doing those rides each morning and it was a really great way to start out the day.

Prior to receiving my radioactive iodine treatment I was able to visit with another familiar face from Misawa that is now living here in Utah. My friend, Ginger Anderton came to visit with me and we went to lunch at one of my favorite restaurants, Paradise Cafe and that really cheered me up. It felt so wonderful visiting and catching up with her and hearing of what has been happening with her family.

Another great thing that uplifted my spirits was receiving a care package from the students in the youth group before I received my RAI. Each one of them wrote me a letter explaining everything going on in their life and the things that they were learning. There are eighteen students in the group and I couldn’t have a better group of students; they are truly amazing and they teach me as well! It was such a joy reading each of their letters and I really needed that encouragement to keep moving forward in my treatment. In addition, they also sent me a variety of items from the 100 yen store. I love that place! It is the equivalent of a dollar store, but so much more; a lot more quality merchandise than you would see at dollar stores in the U.S.

Then, it was time to start the withdrawal off of my thyroid meds; at first they switched me from my Levothyroxine to Cytomel for a few weeks and then absolutely no thyroid meds whatsoever! Now the ensuing problems began when you are considered as being in a hypothyroid state which is low thyroid; it causes extreme fatigue, brain fog and pretty much an inability to really function. I woke up one morning and passed out, found myself on the floor of the bedroom; my face must have hit the dresser as my eye was bruised and I had a huge fat lip. I looked like someone had beaten me to a pulp. I passed out a few more times and was feeling really horrible and my blood pressure plummeted to very low levels as well. I was feeling so dizzy and lightheaded and my head felt like it was going to explode! I called Dr. Bentz’ nurse who suggested that I go see my PCP doc which would have been a bit hard being that my PCP is over five-thousand miles away! The alternative would be to go to the ER; however, I didn’t want to go and spend hours in the ER just for them to tell me to put a darn ice pack on my eye and lip!

The passing out continued over the next two weeks. I found myself on the floor several times a day not knowing how I got there, or even how long I was on the floor passed out. After the first incident my parents never found me and I never mentioned this to them either. Thank God it happened where there were no obstacles to cause any more injuries. Although I called the endo about it many times, he didn’t offer much help and said that it wasn’t related to the withdrawal off my meds. However, I really think it was the combination of things: being on the low-iodine-diet, the withdrawal of meds and all the changes my body was going through – my body was just in major overload and I believe was just shutting down. That was truly the most miserable two weeks of my life and it was much worse than going through the surgery. I would not wish anyone to have to go through that hypo hell ever!

I have a friend who I met from the online support group, Inspire, who recently went through RAI and she wrote a poem about our medications which I thought was pretty talented and she has allowed me to post this in my story:

Ode to My Thyroid Medication

Thyroid medication, thyroid medication
Oh how much I have missed you,
I never realized how much you did
Until the lack of my thyroid tissue.

Thyroid medication, thyroid medication
There has been too much lack,
All I have done since you’ve been gone
Is lie on my back.

Tired, brain fog, I’ve been a mess,
And a ton of other symptoms
I must confess.

You are so small
I never would have thought,
That not taking one little pill
Could make my life so distraught.

Now you are back
I’m happy to say,
So please work fast
And don’t delay.

I know it takes time
For you to do your thing,
So looking forward
To the good things you bring.

Thyroid medication, thyroid medication
I have one thing left to say,
I promise to take you
Every single day.

                                   — Gina Froment

Endocrinology Evaluation

Next, in my treatment plan was to see the endocrinologist at the University. He explained that we were going to try the RAI (Radioactive Iodine) treatment first, but there was a problem. Since I had a CT Scan with contrast before coming back to the states, I would have to wait two more months before I was able to receive RAI (Radioactive Iodine) as the contrast will interfere with the RAI and I need more time to get that contrast agent out of my system so that the RAI would be effective. That was another devastating blow to me as I wanted to get back to my family! Unfortunately, my husband’s company would not authorize sending me back to Japan and then to return back for the Radiation Iodine treatment and so I had to stay here in the United States until I was able to receive my treatments.

Final Pathology

They sent me home with one drain in place and I had to strip the drains and record the amount of fluid which was draining. It was a bit awkward having this drain pinned to me, but I managed to deal with it. In addition, when I was discharged I no longer had to follow the non-fat diet and I consider myself pretty fortunate as I know other people have not been so lucky and have required further surgery to correct the issue with a Chyle leak.

I had ice packs on my neck which really helped with the pain and the swelling. I saw the doc about ten days later on March 2, 2011, to get the drain taken out and received the final pathology report. I was told by Dr. Bentz that I had Stage IVA Papillary Thyroid cancer with Follicular Variant. It was partially encapsulated as it was not completely contained in the thyroid and extended into the lymph nodes. They had removed over fifty-eight lymph nodes with nineteen of them being positive for cancer! I also had evidence of Hashimoto’s Thyroiditis, which I would not learn until much later down the road. The surgeon said that it was very aggressive and then informed me that External Beam Radiation may be required to totally eradicate this, but that RAI (Radioactive Iodine treatment) would be tried first. Please make a note that I will avoid External Beam like the plague – I believe that there are too many more risks involved with that which I am not sure that I would be willing to take; however, it would have to be the very last option for me!