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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.

Calming The Beacon

Update one week post embarrassing burn, and I am happy to report that it is almost entirely healed. I religiously applied Kyäni Nitro Xtreme (pure Noni) topically to the area several times each day. Noni increases the production of nitric oxide which repairs, defends, and maintains every cell of the body. A valuable lesson learned in all this, if you plan to place a hot compress on an area that lacks feeling, test it first on an area that does have feeling -- it's common sense really (sigh).

A Beacon to show the way

I'm jumping ahead to present day, but rest assured I will post part 4 of my story.

I've been dealing with an ongoing problem involving my right Parotid salivary gland that started just after surgery and got surprisingly worse when the gland was further damaged by radioactive iodine treatment. I generally experience pain when I chew food. And, occasionally I experience flare ups. During a flare up, I have constant pain and swelling in the gland and jaw area, including a not so pleasant phenomena where several times a day the gland randomly releases a bitter tasting liquid (is it saliva? I don't know) -- the jaw/gland pain also triggers migraine headaches. The flare ups last on average about two weeks. But that all changed when I started experiencing my most recent flare up, about four weeks ago. I thought it would only last at most two weeks and then it would work it self out. That unfortunately did not happen, the pain and swelling just gradually escalated to the point I had to avoid chewing food entirely --which I suppose I could view as a positive in my favor if I lose a few pounds.

To help resolve the issue, I was instructed to apply hot compresses to the area, in hopes it would help stimulate the gland. Okay sure, no problem, I can do that. Last night I prepared a hot compress applying it to the area while I sat back, relaxed and read. I must have kept it on about 15-20 minutes until I noticed I didn't feel so well -- I became quite nauseous. You see, I have nerve damage on the right-side of my neck and cheek and have no feeling in that area-- it's completely numb. I did not know I had burned the hell out of my skin of both my neck and cheek.  I'm sure if I had feeling there, I would be in a lot of pain. But luckily I feel nothing, except nausea. To add insult to injury (pun intended), I must confess that I do not like to bring attention to my neck and the long 10 inch scar that resides there or even the slight neck deformation that appears on the right-- yet I'm also not one to cover up, it's just plain uncomfortable. And now, I have a bright red blistery beacon of a burn to bring everyone's attention to my neck. Fabulous! This, my friends, is nothing more than a rookie move. So if any of you have numb areas and need to apply hot compresses, for goodness sakes proceed with caution and be smart about it, test the hot compress on an area you have feeling first-- if it's too hot, don't put it on your numb area. Please, learn from my ridiculous mistake.

10,000 Strong Against Thyroid Cancer: Neuropathy Symptons and Thyroid Disease: The Pain is Real

10,000 Strong Against Thyroid Cancer: Neuropathy Symptons and Thyroid Disease: The Pain is Real

10,000 Strong Against Thyroid Cancer: Chronic Illness: Dealing with the Day to Day Challenges

10,000 Strong Against Thyroid Cancer: Chronic Illness: Dealing with the Day to Day Challenges

Part 3: Are you kidding me, a six and half hour surgery

It's never easy anticipating an impending surgery. At least, not for me anyway. A week before surgery, my good friend, Michelle, came to visit from Southern California. It was fantastic. The goal for this week was to take care of any last minute details, prepare my room for a long convalescence period and enjoy myself and have some fun. I had a great week with Michelle. I am a worrier by nature, but this week I was so distracted that I never really had time to worry – absolutely awesome. Michelle stayed until the day before my surgery. I will forever be grateful for that week with Michelle. The day before surgery was such a busy day, there was Michelle's planned departure, my oldest daughter, thirty years old, flying in from Las Vegas, and my youngest daughter, twenty-four years old, had been visiting New York and was expected back that evening. I had reserved two rooms in a hotel near the hospital. We would stay there the night before surgery and then while I was in the hospital the girls would have a place to shower, eat and rest. My youngest daughter’s flight was delayed, she made it home late that night, so by the time we made it to the hotel it was quite late. It was about this time that my anxiety kicked in. I was very glad that I was surrounded by my three daughters –having them near me gave me a sense of calm during a stressful situation.

The Day of Surgery. I had to be there EARLY –it was still dark outside. I checked in and waited to be taken back for prep. It was all so surreal. When I think about that time now, it seems like a dream, a bad dream actually. Once I was assigned a room for surgery prep, activity arose –there were nurses coming in and out of the room. My surgeon came in a number of times to check in and share with me his plan –he anticipated the surgery would take about 6 ½ hours. My word—that was a long time. Since I had my daughters with me, I thought this was a good time to go over what they were going to do while I was in surgery –I asked my older two daughters to keep my youngest busy because I knew this was not going to be easy for her, I could tell she was concerned, emotional and worried. The anesthesiologist came in a few times –this was my opportunity to let him know that I am a nervous patient and fear surgery. He was interesting to say the least and had a humor I certainly appreciated, he even called me out saying he understood that I was a type-A person and needed to plan and strategize my every move. Yeah, okay, a little harsh to hear, but that’s pretty much me in a nutshell –remember the list making comment from my last post?? The anesthesiologist assured me he would take great care of me –and that he did –he gave me something that made me quite loopy, but hey, I was no longer nervous or worried. Mission accomplished.

I don’t have any memory of saying good-bye to my kids or ever being taken to the operating room. The next thing I remember was waking up in the recovery room. My two older daughters were there –my youngest was busy setting up my hospital room—a good thing for everyone. As I slowly came to reality, or pseudo-reality, I was loopy as all get out –plus I struggled with swallowing. Eventually, I was moved to the hospital room I would call home for three days. Surgery went according to plan, except it went a little quicker than expected. Yay! My entire neck was a white blob of bandage and I could not move my right arm very easily. You see, when the surgeon cut into the side of my neck (he referred to it as deep neck dissection) to get to the tumors, he had to move several nerves out of the way, including my right shoulder muscle. Over the next few days, it would be revealed that I have a keen inability to withstand narcotics. The nurses tried three or four different kinds, all of which, my body reacted to in a negative manner. I was then put on straight Tylenol for pain. Poor me. I could not believe that I was unable to take any strong pain pills. I would make the world’s worst drug addict. I guess that’s a good thing, but at this moment, I was in so much pain that I needed something stronger than Tylenol. That was not meant to be, so I was destined to channel the pain with only Tylenol. Rest assured, I got through it alright. I was able to go home on day three. I was so glad to go home and get into my own bed. Now I could convalesce in the comfort of my own home. I still had a long road ahead of me, but the surgery part was over --thank goodness. I had a few days before I needed to go in and have the dozen or so staples removed from my neck and a good month to rest and heal before radiation treatment. My next post will cover some of the health issues I dealt with post surgery, pre-radiation prep, radiation treatment, the isolation period and all the wonderful side effects.