Wednesday, February 26, 2014

The Waiting Game. Which is not a game.

First of all, I have to stop for just a minute and let y'all in on a secret. I've called my husband Sound Man since the start of my blog in 2008 to have some sort of anonymity. He has since started his own blog, and uses his own name in his profile. So, I'd like to start using it, too.

Everybody, meet my husband, Michael.

Okay, back to the story.

To read our cancer story so far, start with these posts: 

My Husband's Cancer
"Trust"
The Diagnosis
The Surgery
A Little Help From Our Friends

After Michael was released from the hospital, we began the long wait before he could take his radioactive iodine treatment. RAI is given to thyroid cancer patients to kill any remaining thyroid tissue that's left after surgery. At a follow up appointment, the doctors explained what would happen in the days leading up to the treatment, and why.

Michael would be on a low-iodine diet for two weeks, then he would take the RAI. The reason for the LID was to starve his body of iodine, the mineral that keeps your thyroid healthy. They wanted any thyroid cells that might remain in his body to be so hungry for the iodine that when he took the "poisoned" iodine, they would just soak it up like a sponge. This, of course, would kill any remaining cells.

Armed with knowledge and a starting date for our diet and treatment, we left the doctors' office confident that we could handle this. Michael was to have a couple of shots of medicine that would allow him to stay on his Synthroid, the medicine that replaces your thyroid hormone so your body still functions as though it has a healthy thyroid. By staying on Synthroid, he wouldn't feel as bad as he would if he had to come off of it. The shots he would be taking would force his TSH (thyroid-stimulating hormone) level to go up to the proper level before he took the RAI. His TSH level was supposed to be over 35 (normal is around 4.5. Yes. I said 4 point 5. His was supposed to get up to 35. That's THIRTY-FIVE. Anything over about 7 makes you start feeling yucky. I know this from my own personal experience). Without the shots, he would have had to come off of his Synthroid in order for his TSH to get to that level. Confused yet? Welcome to the club.

The day before his first shot was scheduled, just a few days before he was to take his radio-active iodine treatment, we found out that there was a mix-up with the company that makes the shots and our insurance company. We, along with the sweet, precious girls at Dr. Amanda's office, scrambled to try to find a solution to the problem so that Michael could get the shots and have the RAI as scheduled. To make a very long, very frustrating story short, it didn't happen. We were so disappointed. Michael would have to come off his Synthroid in order for his TSH level to get to the point it was supposed to in order for the RAI to work.

We had been on the low-iodine diet for two weeks before hearing he would have to come off the Synthroid, and were already really ready to get back to a normal diet. The recipes were really delicious, but I wasn't limited like Michael was. I could have dairy, and eggs, and processed food, etc. during the day, but he couldn't. Supper was great, but he really struggled with finding food that was worth eating for breakfast, lunch, and snacks. I was making homemade bread (allowed...I made a TON of it!), so that was enjoyable for him, but other than that, he was really ready to get back to normal food.

When the news came that he'd have to wait for another three weeks for his TSH level to get over 35 to take the RAI treatment, the realization hit us that we'd have to continue the LID diet. Talk about depressing. The day after Michael stopped taking his Synthroid, he started feeling so bad he would have to stop working (he was able to work from home for a while) for a little bit and get back to it later. He felt awful. AW. FUL. It was hard for him to get out of bed in the mornings. By the end of the three weeks, it was all he could do just to get up and get ready to go to the doctor to have his blood tested. Feeling this bad, along with continuing pain from the surgery, was wearing him down.

During all this time, we asked everyone we could to pray for his level to be over 35 after the three additional weeks. Dr. Amanda didn't have much confidence that his level would be over 35 after just three weeks. She said it normally takes five weeks for it to get so high. So when the results came back, even though we had prayed so much for it to be the right level, we were nervous. Well, as He had ever since Michael first found out he need to have his thyroid seen about back in January, the Lord did His work. Michael's level was 85. Yes. EIGHTY. FIVE. Need I remind you normal is 4.5? No wonder he felt horrible! As bad as he felt, we were ecstatic that we were finally given the go-ahead for the RAI treatment. We were praising God for days!

Next post, I'll share one of our favorite LID recipes!

1 comment:

Barbara said...

Good for you, Heather, in how you do all that is within your power to make life (i.e. eating) easier for Michael. What a struggle that must have been!! But thanks be to God for making that lab number so far and above what it needed to be!!! Wonderful story. I am enjoying the reading of your adventure. Thanks so much for sharing it!