Episode 19: He's Radioactive!

Listen on Apple Podcasts Listen on Spotify

I had survived my husband’s surgery and thought that was the worst of it. However, I didn’t fully understand the work Radioactive Iodine therapy would be for me. 

Radioactive Iodine Treatment and the LID diet. 

As you know from other episodes, we had decided that my husband would do everything he could to recover and heal. I would take care of the information and everything else. 

When he had his thyroid removed they decided that he should also have Radioactive Iodine treatment soon after surgery. They kept him off a thyroid hormone replacement medication which made him feel like crap and then just weeks later he had to go on a special diet called L.I.D. to prepare his body for the treatment. 

A L.I.D. diet is when you eat as very little iodine as possible. Thyroid cells feast on Iodine. So essentially you starve the remaining thyroid cells for a week or two - depending on your doctor - so that when you ingest the Radioactive Iodine the thyroid cells will eat it up and show up on a scan. That’s how they can see if the cancer has spread.

I didn’t realize how much iodine was in the food we eat. It’s in - iodized SALT and anything that contains iodized salt, 

• Diary products
• Eggs
• Bakery Products
• Chocolate
• Red Dye and many other things like Agar Agar which I don’t fully understand.

We could have said it was just too much work to figure it out. Remember this was 6 years ago and there are a lot of information sources that we have now in 2020 that weren’t available then. 

No one monitored his food intake before he received the treatment. In fact other than a pamphlet we didn’t get much more information. There were - thankfully a couple of websites that had free cookbooks and information that were very helpful. 

We could have decided to only follow the instructions half way as well. 

But as we looked at what needed to be done it really was a small price to pay. If watching how much iodine he ate was all we needed to do - all we could do - to make the RAI treatment successful then we would do it. 

I’m not going to say it was easy and I did have a few moments where I just got completely frustrated and felt stuck in trying to figure out what to give him to eat. But for a week we did things together in the kitchen that we didn’t normally do. We both worked on planning meals. We both baked bread and learned how to make special iodine free pasta.

Even though he was in a really crappy place physically our working on his special diet gave him something else to focus on and a way for us to create some moments we might not have had otherwise. 

What created some memorable moments was going in to have his treatment. 

Let me first say that I hope radiologists have a better standing protocol for RAI. His oncologists’ hospital was too far away to have the treatment there so the orders were sent to our local small hospital. The disparity between the rules we were told by both hospitals were alarming. Each had a difference of opinion on how long until a person would be safe to be around, before kissing would be safe, before a person could travel without a card that stated they had a radioactive treatment. You would think that ingesting radioactive material would create the need to have precise instructions followed by all scientists. RAI is the process of ingesting a radioactive pill that is introduced into your body so that any remaining thyroid hormone can take it up so that the doctors can - in a week - see where there is any remaining radioactive material in a scan. 

The patients sole responsibility is to:

• Ingest the pill. 
• Get home swiftly.
• Quarantine for 5-7 days.
• Not throw up. 
• Push as much fluid as possible so that the rest of the body is not negatively impacted by the radioactivity. 
• Properly dispose of all trash, clothing etc as instructed by the radiologist once you are able to leave your living space. 
• Travel with a card for 3 months that explains you had RAI in case you make any radioactive sensors go off on the road or in the airport. 

How does that sound?

When we went in for the treatment we were placed in a little room and the nurse came in with a small lead pot, that weighed at least 5 pounds, all to hold one little pill. She wore a lead vest and protective clothing as well as a geiger counter. You take the pill, show your mouth is empty and then we were told to swiftly go back to the car, sit as far away from each other and go directly home where he would go into his quarantine area. 

The one thing they were very serious about was not throwing up. If he were to throw up they would have to process the area like a contaminated waste situation and people would have to come in to clean things up.

So of course he got home and found himself nauseous. It lasted all day and by the evening when I couldn’t take trying to figure out how to make him feel better I had to call several phone numbers. I finally got fed up and after asking for the person I was talking to to identify themself I reminded them the implications of my husband actually throwing up and upon calling the hospital to report I needed a clean up I would let them know who wouldn’t help us. After that, I actually got to talk to a doctor who was very helpful. So helpful that he continued to call and check in for a few days after that. Thankfully he prescribed something that worked. 

It was an extremely difficult week for him and in the end they did find the cancer had spread to other areas of his chest and neck. 

Looking back at what I wrote for that week the underlying theme was loneliness.

Being separated from my husband and not be able to comfort him was torture for me. He had other complications that week. The treatment made his neck swell to the point that it was hard for him to swallow. He continued to fight nausea for almost the whole entire time he was there. And on top of it he had to do it all by himself. I couldn’t hold his hand to let him know it would be ok. I couldn’t keep him company when he got bored. There was nothing I could do but leave his food at the door and occasionally peek in and give him a smile. 

It felt lonely after spending so much time working together in the kitchen to make his special meals to then go back to handling food prep on my own. 

I felt alone the night I had to fight to get help from the hospital. Desperately trying to keep him from throwing up when it was after hours. 

My daughter stayed at a friends house for the first few days of his treatment and when she got home his absence was felt even more. 

I wasn’t alone but I felt lonely. A part of me was missing. 

As caregivers we experience loneliness a lot. I don’t think I ever expressed how I felt when people checked in on him at the time. We had a lot of support from friends and family but again the focus was on him. I was without my partner, tired, scared and I felt alone. Alone to figure things out, to handle the house, to care for my daughter. It’s not that as caregivers, we can’t handle things. Most times we just soldier on and not deal with our feelings right? There is no time to deal with what is going on inside us because there is a lot going on in there. So, we continue on just letting it all pile up until we become overwhelmed by the weight of it. 

 Everyone was interested in knowing how he was because first they care about him but also because he was purposefully made radioactive and that is a reality only found in comic books. So it was easy for me not to speak of how I was feeling to anyone during that. 

Feeling alone is very uncomfortable. But it made me really value having him back into the house with us when he was finally able to. 

His RAI experience was rough and I think it’s good for you to hear that. I have heard and read so many people say they went through it easily. People need to know there are different possible reactions to the treatment. Also, Thyroid cancer is not the “good cancer” that people like to call it.  I can’t imagine how scared and alarming and lonely it could make a person feel to have been told it would be a piece of cake and suddenly find themselves finding recovery from surgery difficult and experience side affects from the RAI like my husband did. 

I hope if you are going to have RAI soon that you don’t have the same reactions my husband did. I hope that if you are that persons’ caregiver you don’t have all of the stress and loneliness I experienced. But I want you to know that it is a possibility and if you do or did have to go through it the way we did that you aren’t the only ones.

If you are caring for someone that needs to go on the LID diet there are some good resources online. There is a blog out there that has a free cookbook too. I really found that going into this as a family was very supportive for my husband and brought us together. Even my daughter enjoyed helping us bake and make pasta. It’s not easy to do but you can do it. 

I would request an anti nausea medication from the doctor who orders the RAI. Again if you don’t need it - fine but at least you aren’t threatening people at 9 pm to find a doctor to do it for you, like I had to. 

As for you, caregiver, identify something that you can do for yourself during these three weeks. Can you make the LID diet a fun family project (making sure everyone in the house has what they need nutritionally) ? Is there something you can look forward to doing while your loved one is in isolation? Is there a movie you’ve been dying to watch? A stack of magazines you’d like to go through? Is there an online yoga class you’ve been meaning to try?  Maybe you have a journal you’ve been meaning to write in? Find something that is calming for you. Something you don’t always get to do so you can look forward to doing it. 

Find something for yourself because no matter how good or bad the reaction is to the treatment they are to stay in a room by themselves for at least 5 days. That means you’ll be in charge of bringing them all of their food and checking in on them to make sure they are ok. 

 It might not seem like that is a lot but remember that is on top fo everything else in life you have going on. 

 Be ready to turn on that caregiver switch and make sure to make time for yourself in the process.

Thank you for listening to and supporting the podcast. If you enjoyed today’s show, please share it with someone who might benefit from listening to it.

I would be extremely grateful if you would consider taking a minute to leave an honest review and rating for the show in iTunes. They’re helpful when it comes to reaching other caregivers and I read each and every one of them personally!