Part 4: Going Nuclear: Radioactive Iodine Treatment for Thyroid Cancer

Radioactive Iodine Treatment for Thyroid Cancer

About one week after the TT and radical neck surgery, I was introduced to the woman who would become my Endocrinologist (“Endo”). During my appointment with her, she evaluated the dose of the thyroid hormone medication I was taking, quickly determining that it needed to be increased from 100mcg to 175mcg (I will cover the plethora of medication issues in another post). Once we had covered the medication dose change, we moved on to discuss in great detail the next step I would embark upon: Radiation Treatment. In a nutshell, I would need to start a low iodine diet (LID) immediately to starve my body of iodine. After one month of LID in a one week period, I would need to go into the Cancer Center’s Infusion Department three days in a row to receive a Thyrogen shot and a few days after that, I would then go in to Nuclear Medicine to receive and consume a radioactive iodine pill followed by complete isolation in my room for one week.

The Low Iodine Diet. For the foreseeable future, I needed to religiously eat a LID, which I started immediately after my appointment. During the appointment, my Endo provided me with a print out of LID acceptable food and what was PROHIBITED food. She stressed that during this time, I should avoid eating out because I have no control over what is put into the food and there is no practical way of knowing whether or not the food is high in iodine. The first thing I noticed on the list was the prohibited foods that would impact me during the diet, notably all seafood. I generally eat seafood several times a week and now I had to stop completely, seafood was the main way I received protein. I thought the least impactful would be processed foods, fast foods and eating out, until I started the diet and found myself wanting so badly to go out to eat. The diet allowed some meat, but I was vegetarian and ate seafood and on rare occasions, chicken or turkey. Everything I ate here on out would be primarily vegetables and fruits, and they would need to be fresh and only salted with kosher salt. Though I complained most of the time during this specific diet, I became very creative with meal choice and preparation. I am certain this diet forced me to eat uber-healthy.

Luckily, about two days into the diet I was fortunate to watch the 2011 documentary entitled, Forks Over Knives, a film that advocates a low-fat plant-based diet as a means of preventing and combating a number of diseases. Forks Over Knives explores the scientific studies made by American physician Caldwell Esselstyn and professor of nutritional biochemistry, T. Colin Campbell, that results and conclusions suggests that “most, if not all, of the degenerative diseases that afflict us can be controlled, or even reversed, by rejecting our present menu of animal-based and processed foods.” If you haven’t watched Fork Over Knives, I highly recommend it. And, there’s even a Forks Over Knives cookbook. I will confess that this cookbook came in handy while I was on the restricted low-iodine diet. I tried out several of the recipes and loved the meals.

The Radiation. I received the Thyrogen shots three days in a row. I wasn’t sure how my body would react to the Thyrogen --I’m happy to report that my body welcomed it without issue. But before I knew it, the day had arrived in which I would receive the radioactive iodine dose. This day was quite surreal. I arrived at the Nuclear Medicine Department and was led back to an examination room. On the counter sat a Geiger counter, I knew upon first sight that it was a Geiger counter –with excitement I quickly asked the nuclear physician what it was used for in the doctor’s office. He was shocked that I knew what it was and asked me how I knew, to which I responded that any respectable nerd would know that it was a Geiger counter –we both laughed. Following, he explained to me that once I consumed the radioactive iodine pill he would check me with the Geiger counter and once I reached a certain radioactive level I would be rushed out the office and must go home and begin isolation. And, I would continue eating the low iodine diet for an additional 2-3 weeks until I have a PET scan. His assistant brought a large metal container into the examination room. Inside this large metal container contained a very small radioactive iodine pill. It was odd that such a tiny radioactive pill required such a large container. When I was ready, the physician opened the ominous strange metal container and pulled out the tiniest little pill with tongs and handed it to me to take with a large glass of water. I quickly swallowed the pill and attempted to drink all the water. The physician highly recommended that I drink lots of water and go to the bathroom often to empty my bladder so that radiation doesn’t sit in my bladder and later cause bladder cancer or other complications. I took this to heart and resolved to drink large quantities of water and visit the bathroom often. I walked out of the building with my 25 year old daughter, trying not to get to close and expose her. We handed the car valet our ticket for our vehicle. While standing there I thought about how I was entirely nuclear and the valet and those around me (except my daughter) had no clue of my nuclear status. I did my best to distance myself from others. In the vehicle, I sat in the way back away from my daughter. Once home, I hightailed it to my room and shut the door. I even put a towel on the floor at the bottom of my door in an attempt to contain the radiation emission to my room.

I am told that I would secrete much of the radiation out of my body in the first 24-48 hours –that is good news but I was not going to take any chances. I had stocked up on paper-plates and plastic utensils as added protection against spreading radiation to my daughter. When I was hungry I would run downstairs as quickly as I could, prepare a quick and easy low iodine meal, and quickly make my way back up to my isolation jail. We have two cats and a dog, and I was told that small children and small animals are more at risk so I must avoid them entirely for a minimum of 10 days. This was very difficult, but I managed to avoid them for an entire 10 days. I felt fine that first afternoon, I made myself comfortable by cozying up in my bed and then watched a few period piece movies. It wasn’t until the wee hours of the night that first night, when I awoke overwhelmingly nauseated and knew this was not going to be good.

The Radiation Side Effects. I vomited on and off for about two weeks, while the nausea continued for around 6 weeks. I lost the ability to taste food for just over a month. It actually took me several days to figure out that I had lost my taste buds. I fail to recognize this in the beginning. I had just thought my food was terribly bland so I doused it with large amounts of kosher salt. A few days after taking the radioactive pill, my joints, neck and voice box became sore and inflamed. This continued for over a month, and finally the swelling went down –even today after 9 months, my neck will randomly swell up and last for about a few weeks. My right parotid salivary gland became sore, inflamed and gave me painful grief when I ate anything sour or sweet, this lasted on and off until present time. I sucked on so many lemon candies I wore the roof of my mouth completely raw. Most recently, my salivary gland experienced a flare up that lasted 6 weeks. Strangely, this flare up was different from previous flare ups –this time, I suffered pain every time I chewed food and it didn’t matter whether it was sweet, sour, or spicy. I also experienced a continuous nagging headache, as well as, experienced the gland releasing a rush of bitter saliva several times a day. I cover my recent gland flare up in a previous post. Please check it out.

Two weeks after radiation I noticed I was losing large amounts of hair every time I brushed it or even looked at it. Shedding so much hair was alarming to me. My skin looked pale, drab and blotchy, and was serious dry and avoid of any moisture. I was such a mess and felt awful overall. –my entire body ached. Some side effects didn’t appear until much later, such as my menstrual cycle, which became out of synch. In fact, I do believe I have been thrown into premature menopause.  Occasionally, my eyes will become very watery for a few days, another side effect. I have a handful of side effects that today, after 9 months of when I received radiation, arise and cause me grief. I have learned to expect them if they come and deal with them patiently.

The radiation treatment and aftermath was no doubt the worst of my thyroid cancer experience. Selfishly, I hope that I will not require another round of it.