Part 3, Radioactive Iodine (RAI) Therapy

What’s it like to get Radioactive Iodine (RAI) Therapy? No fun.

Radioactive Therapy ~ Hazardous

While I was preparing for thyroid surgery in December 2016, my endocrinologist said I might still have thyroid cancer in my body after the thyroidectomy, so I would need Radioactive Iodine Therapy. But before getting the treatment, I’d have to be on a Low-Iodine Diet (LID) for two weeks, during which I would get NO levothyroxine, my thyroid hormone.

January 2017
Early in January, I saw a voice therapist, but she didn’t have any advice for someone with a paralyzed vocal cord.

My husband and I spent the second week of January on a farm in Pennsylvania with our daughter and her family. Had a fun time. Until the flu hit them. It hit me on the flight home and Lee a day later.

At the PA Farm Show with Family

In an email to my sis-in-law on 1/27/17, I wrote:

Lee and I have pretty much recovered from the flu. He’s been working quite a bit but didn’t resume his exercise routine until this week. I still have a little cough, which seems fitting as I had an appt with a pulmonologist today to investigate an old scar on my lung. It’s a tiny, non-cancerous spot that has nothing to do with my thyroid, and they won’t rest until they determine what caused it.

My endocrinologist gave me a detailed schedule for six weeks, starting on January 18, when she switched me to a different thyroid medicine, a short-acting one called Cytomel (liothyronine.) The thing is I still get vedddddy sleepy in the afternoon. Even when I take a nap, I have no trouble sleeping at night.

She wants me to quit taking all thyroid meds and start the Low-Iodine Diet on February 15 to make my body hungry for iodine. I’m due to get a Radioactive Iodine pill on March 1st and will be radioactive for a few days, during which time I have to stay an arm’s length away from Lee and completely avoid all others. On March 3, I can go off the Low-Iodine Diet and eat whatever I want, although they tell me the Radioactive Iodine makes things taste either metallic or soapy.

Several friends at church have confided they’ve had their thyroids removed – odd thing to chat about in the hallway at church, ha! – and I know a writer friend who’s been through the Radioactive Iodine treatment. It’s nice to know they’re all doing fine.”

February 2017
I made an entry in my journal on Feb. 13, 2017 – Monday

On Friday I had a CT scan of my chest to check on the lump in my right lung, and today the pulmonologist called with the news it had grown from 1.6 cm square (roughly) to 2.1 x 2.1 x 2.7cm. He suggested two options: take another biopsy or have a surgeon remove the lump. After he gave me more detail, I agreed the second option sounded best. (He also inquired about symptoms, but I don’t have a cough, haven’t lost weight.)

After I got off the phone, I pondered the troubling news. Prayed immediately, committing my future into God’s hands. Got online to see what information I could glean because it sounds to me like the thyroid cancer has metastasized. If that’s so, then my cancer has progressed to Stage IV. Could that be possible? By the end of the morning, I got a call from the office of a thoracic surgeon, scheduling me for an appointment on Thursday. The speed of the consult indicates they think something should be done posthaste.

I drove to Old Country Buffet to have lunch with Lee. As we talked about the path report, I said it seems too coincidental for the lump not to be related to the thyroid cancer, which was when I realized I’d been assuming it had metastasized. But the pulmonologist said he didn’t know what caused it. So it’s a big unknown. But not to God. And this comforts me.”

I kept busy (and distracted) by preparing food for the Low-Iodine Diet (LID). (See blog: My Low-Iodine Diet). On February 15, I hid the iodized salt and went on the diet.

Low-Iodine Babouti

From an email to my sis-in-law on 2/28/17:

This is Day 14 for me on the Low-Iodine Diet. After lunch I slept for an hour and a half, maybe because I walked the treadmill for 30 mins this morning. Tomorrow is my appointment for going radioactive, so of course I’m trying to prepare by moving clothes into the downstairs bedroom, where I plan to sleep for the next week. We’ve also bought latex gloves for when I need to touch something like a cupboard handle that Lee might touch. Also disinfectant wipes for cleaning surfaces such as the TV remote. My contact in Nuclear Medicine said it’s a good idea to place a washable blanket over my favorite couch. It’s only during the first week that I have to be careful about everything. Fortunately for Lee, he’ll be at work most days.

I also loaded up on movies and audio books. You’re right that I tend to fall asleep, ha. But they make a nice background to sleep by. Regular daytime TV is so boring! I get to resume taking my thyroid medicine on Friday. I’m wondering how long it will take for it to kick in. I’ve been doing exactly nada for writing. Have no focus energy, you know.

Oh, I had a nice birthday. Bekah and Adam had us over, and she made Couscous with Peanut Sauce, salad, and a Chocolate Wacky Cake for dessert, all low-iodine.”

As it turned out, the LID food I made and ate day after day was okay but monotonous. Exodus 16:35 says the Israelites ate manna for forty years! I don’t know how they did it.

March 2017
On March 1 at 8:15 a.m., I drove to the hospital. The Nuclear Medicine tech pointed to a room with a radiation warning sign, said to go inside and take the little blue capsule – with the Radioactive Iodine (I-131) dose of 300 mCi – out of the lead container, put it in my mouth, and gulp it down with a cup of water. So I did.

My Own Radioactive Rooms

On 3/3/17 I sent an email to my dad and brother and sister.

Two days ago I took a one-time dose of Radioactive Iodine. Not only does it kill my thyroid tissue but also that of anyone who’s near me! So I’m quarantined for a week. Have to stay at least an arm’s length from everyone, including Lee, until March 8. (In case you’re interested, the half-life of Iodine is 8 days.) I’m sleeping in the downstairs guestroom and have exclusive use of the downstairs bathroom. When Lee comes and goes, he and I salute each other, ha.

The day of the treatment wasn’t bad. I lost my appetite and felt strange, wondering if I would start glowing in the dark. Yesterday, the nausea hit, and my salivary glands swelled up so I looked like a chipmunk.

After RAI

Mostly, I slept. Today, I went back on my thyroid medicine and got to go off the Low-Iodine Diet. Hooray for that! I’m feeling a bit better, although everything tastes metallic. Lee and I played a game of SkipBo wearing rubber gloves so I wouldn’t contaminate the cards – or him.”

According to my journal, I still had no appetite. Ate popsicles. Noticed metallic taste on 3/3. Even licking my lips tasted horrible. The only things that tempted me were fresh fruits and salad and Top Ramen. Couldn’t stand bread, meat, chocolate, and water, so I drank diet drinks (Crystal Light).

Cheer during Therapy

Lee was a big help, bringing in Chinese food and anything else that sounded good to me. (Although I was sluggish and swollen, I was glad to know I could go without levothyroxine for two weeks and not fall over dead.)

Finally, the quarantine was over. On Day #8, I woke up to a kiss.

Thanks for reading!

Next: Wedge Resection of the Lung

Part 4 posted on February 20, 2018

14 thoughts on “Part 3, Radioactive Iodine (RAI) Therapy

  1. Once again, a great post, Norma. Though I knew about these things before, I feel like I’m experiencing them with you and feel your heart in your blog. Thanks for your willingness to share these very personal experiences. We continue to lift you up to the One who loves you most of all.

    1. Your prayers are invaluable to me, Laura, and your reference to the One who loves me (and us all) is so uplifting. Thanks!

  2. It’s courageous and thoughtful of you to share these things, Norma. We all can experience a bit of what you’ve gone through in reading your posts, and they are there for those who will be helped or consoled by them now and in the future.

  3. Thanks Norma so much for your sharing. Mary and I thank the Lord for His Awareness of every detail of your experiences these many months and His Sovereignty in His caring for you!
    Love you!
    Dad

    1. I appreciate your reading my blog, Dad and Mary. Yes, God has cared for me in awesome ways during the journey. Thank you very much for your prayers. Love you, too.

  4. Sure appreciate being able to see and read what you’ve been through Norma–so well written and feel like we’re experiencing it with you!! Such a helpful blog for anyone going through rough scary times!! Love you and will continue to pray!! Feel so blessed to be able to share in this!!

  5. Your radioactive iodine story brought back memories. Chuck was diagnosed with thyroid cancer in 1985 and 2 weeks later had to drink a concoction of radioactive iodine. Because we had children, the doctor recommended that he stay in the hospital for a week. Even after he came home, he had to stay a minimum of 12 ft from them. It was hard on him and the children. He also said that everything tasted metallic. He never had another problem with thyroid cancer and we were so thankful to have him till May 2016 when he went Home due to Alzheimers.

    Thank you for posting your blog. I believe it will help others! You are so brave and such an inspiration to all who read this blog!

    1. Thank you for sharing, Suzanne. I’m sorry for all that Chuck and you went through. The metallic taste lasted over a month for me. I appreciate your encouragement to blog.

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