In August 2016 we scheduled my radioactive iodine treatment. Your thyroid glands absorb iodine. This is why people who don’t get enough iodine get large masses called goiters on their necks. Food producers started adding iodine to salt so most people living in industrialized countries get plenty of iodine. The fact that your thyroid loves iodine is great news! This means that doctors can have you swallow a form of radioactive iodine and the radiation effect is isolated to thyroid type cells alone. There are a few more areas that can have “iodine absorbing cells” and those include salivary glands, the lining of your stomach, bladder, and female reproductive organs. The hope is if you take radioactive iodine it will kill off any remaining thyroid/cancer cells in your body. Thyroid cells can be left behind from the surgery or cells that have metastasized can migrate to other parts of your body.
To prepare for iodine treatment it was required I go on a special diet eliminating iodine so my thyroid cells would be eager to suck up as much of the radioactive iodine as possible. Here is a visual aid to show what I was allowed to eat and what I was not allowed to eat.
My doctor also said to keep servings of chicken or beef to 3 ounces per day. No sea or rock salt. Trust me people, this diet was much harder than it looks. During this time all I could think about was food until I discovered an amazing Facebook group called The LID Life Community. This changed my world. People not only shared recipes but they contacted various manufacturers to find out if they used iodized salt in their packaged food. This opened up so many food options. I will admit I ate way too many bags of Lays Original Potato Chips during this time (non-iodized salty delicousness). Many care providers require you to do a scan every 3 to 5 years to check for reemerging thyroid cancer. Endocrinologists have you stop your thyroid medication and eat a low iodine diet and then they administer a very very low dose of radioactive iodine and do a full body scan. Hopefully your body will light up all around your thyroid with a slight glow in before mentioned common thyroid cell areas but no glowing anywhere else. Glowing everywhere would show it had metastasized.
It was also during this time I developed zombie apocalypse levels of licorice cravings. Yes, black licorice. I was dreaming about it. My mom finally emptied out a store and brought me every type of licorice she could find. I looked it up and when you have low thyroid people often crave licorice. Who knew!
Normally doctors want you off all thyroid medication for at least a month before receiving radioactive iodine. A month with no thyroid meds would have meant a month in bed. With my travel schedule, four busy kids, and it being summer it just wasn’t an option for me. Thankfully my endocrinologist put in a special request and got a medication called Thyrogen pre approved by my insurance. I had to have two injections. Total cost that was billed to my insurance: $6,000. Thank you Affordable Care Act aka Obamacare!
The hospital bill for my surgery was $30,000, $3,000 for imaging services, $2,000 for doctors visits, $6,000 for radioactive iodine, and $6,000 for thyrogen injections.
That is $47,000 people.
Thank heavens we have always had health insurance and I am so thankful for President Obama and the Affordable Care Act which doubled the quality of our health insurance while cutting our cost in half. Our portion of payment ended up being around $4,000.
After two doses of thyrogen you go to the hospital for your radioactive iodine treatment. They took me back to a small room to find a nurse wearing protective clothing. She opened a lead cooler, took out a small pill with tongs, then dropped the pill into a paper cup and instructed me to swallow it. I was then given extensive instructions in what to do during my radioactive isolation. There is a wide range or instructions given to various patients mine from my doctor included:
At least 4 days in isolation not being closer than 4 feet with any living thing including pets.
1-2 weeks of isolation recommended if coming in contact with children.
Separate toilet should be used and trash kept separate and allowed to sit for a week or burned.
Take as many showers per day as you can to remove the radioactive sweat from your body.
Wash laundry separately.
Some possible side effects of radioactive iodine include:
Metallic Taste in Your Mouth
Loss of Taste
Sore Throat and Neck Pain
Nausea, vomiting, diarhea
And rarely: Permanent damage to your salivary glands
We decided it would be best to have the kids go stay with my sister in Salt Lake City for 10 days. It would be safer and much more fun for them. They had a blast. She planned so many fun activities with them and got a taste of what it is like to parent four active children. She even took amazing photos of them.
I sure missed them though! Over the past ten years I have pretty much stopped listening to music. I think it was just so loud around me all the time that if I had a minute alone I just wanted quiet. Three days into my isolation I felt my body craving music again. It was an interesting experience.
Ben stayed at home but spent extra time at work and slept upstairs in the spare bedroom. He would make me meals then leave them outside my bedroom door on paper plates. I would eat alone in my room. Our dogs and cat were kept out of my room which was torture for them. I had a couple friends and neighbors come and take them to play because they were so lonely. After about three days I was so lonely Ben and I started eating dinner together with each of us sitting at opposite ends of our giant dining room table.
Because of the potential build up of radioactive iodine to your salivary glads they recommended sucking on sour candy to stimulate salivary flow. I was having such pain in my salivary glads that I sucked on Lemon Drops and Sour Patch Kids all the time. I ended up with a mouth full of canker sores and still lots of salivary pain. Normally the salivary glands return to normal after a few weeks. Mine never did. Only half of the salivary glands in my lower jaw work. A few months after treatment I ended up in the ENT office on prednisome, Oxycontin, and antibiotics for a significant infection. My ENT said he had never seen such a severe restriction of salivary glad ducts. YAY me, I’m such an over achiever. We looked at surgery to dilate the ducts but it was established it wouldn’t make a difference in my case. On top of the restricted ducts half of my salivary glands just plain stopped working.
What does this mean for me a year out? I still have very low salivary production. I always have a bottle of water with me with a straw. I can’t eat things like crackers or sandwiches with out taking a drink of water between each bite. I just avoid eating them now. I had “flare ups’ with salivary gland pain very regularly for the first 6 months and had to live on sour candies, anti inflammatory drugs and antibiotics. This has reduced to a flare up about once a month which is a huge improvement. Between the low salivary production and the constant sour foods my teeth have really suffered and I have had to have extensive dental work twice in the last twelve months.
A few days after my treatment I started to have severe stomach pain. Similar to an ulcer. All of the thyroid cells in my stomach were dying and protesting greatly. The pain began any time my stomach emptied. It lasted about four months.
Three weeks after my treatment I suddenly lost all sense of taste. It was such an odd feeling to have food in my mouth but experience no sensation other than tactile feeling. One of my favorite foods, Nutella, was horrible with no taste. It felt like someone spread thick oil all over the inside of my mouth that I just couldn’t swallow. The kids thought it was so hilarious though. They would ask me to eat spicy and terrible tasting foods to see that there was no reaction. A favorite evening for them was the day they brought back Bernie Botts Every Flavor Beans from their trip with my sister. Grass, vomit, earth worm flavors all tasted like nothing to me–the kids laughed for hours. You do get a small sense of “taste” when you burp said beans though. Yuck! It took about three weeks to regain my sense of taste. When I could taste again I liked different foods than I previously had. I can tolerate foods that are much spicier and I like onions and sushi, two foods I avoided greatly before.
A year out some of my body has recovered but not all of it. I still have all that weight to loose. It took me nine months to find a doctor who could help me get my thyroid medications balanced. A break down of basic thyroid hormones for those who may not know, your body needs T4 and T3. Most people can take synthetic T4 and their body will convert that into the T3 that they need. My body doesn’t do this well. So they could give me so much synthetic T4 it would send me hyperthyroid and my T3 levels will still be low. Most doctors and endocrinologists are resistant to prescribing anything but synthetic thyroid hormones. The natural hormones are made from grinding up animal thyroid glands, usually pig or beef, so it is hard to get a very precise amount of thryoid hormones because every animal is different. My body just hates synthetic hormones though. My endocrinologist in St. George was one of the only endocrinologists in Utah willing to work with natural hormones but he was still hesitant to prescribe too much. My Virginia family physician, who is trained in natural medicine and married to a chiropractor, finally discovered the correct balance for me. A combo of Nature Throid, naturally derived thyroid from pigs and high in T3, taken every other day with a much lover dose of synthroid, a synthetic T4, taken on the other days. I don’t do well on just the natural alone because they have to give me such a high dose to get my T4 correct that it makes my T3 too high. We also discovered it must be the brand name Synthroid. My body doesn’t work well with the genetics. Even with a doctors note on my prescription I have still had to fight with insurance companies to cover both of these medications and have had to cover much more of the cost and drive to multiple pharmacies to get them filled. The bad news is that I just got word that Nature Throid is on back order from the manufacturer all over the country. It is already complicated as I have to have my medications filled in the US with a 90 day supply then sent through Diplomatic Pouch to Nigeria which takes at least a month. The insurance companies don’t want to pay for meds unless you are down to about a weeks supply. So yes it has been very complicated. I may have to try Armor thyroid, which I was on pre cancer, and see if we can figure out the magic formula again. Truthfully it is a bit exhausting as I have just started feeling better hormone wise in the last three months.
For now there are no signs of cancer and all I can do is hope that it stays that way. At my yearly ultrasound in May they did find a mass in my neck but based on the density and edges the radiologist labeled it benign but to be watched. I get blood work done every six months, a yearly ultrasound, and will have a low dose radioactive iodine PET scan, yes that means the low iodine diet and off thyroid meds, every 3-5 years. Because of my medical clearance from the State Department that means I have to handle the ultrasound and PET scan when we are on vacations to the US or European countries. Just what you want to do, be on a restrictive diet and on no thyroid medications while traveling on vacation so you can get tests done. Ok, I’m going to say it, State Department, why in the world did you choose to send us to Nigeria again rather than one of the two dozen country options that were on our bid list where I would have been able to have testing and treatment done in that country???? Rant over!
Every day Oliver touches my scar on my neck and says
“Mama, is your scar on your neck always smiling because your cancer is gone?”
And all I can answer with is