The Butterfly in my Throat : Empowerment

Nighttime yoga in pjs

The long awaited slump. 
Post-treatment, I was seeing a lot of progress in a short amount of time. For a few weeks in late February, I was feeling pretty tired and unmotivated, though it was nothing compared to the side effects of radiation. For the first time in my life, I had absolutely no appetite whatsoever. I had a feeling that my thyroid hormones had finally dipped under normal, so I played it safe and got some blood work done. To nobody's surprise, I was hypothyroid for the first time (since the one month of medication induced hypothyroidism in 2008).

I spoke with the endocrinologist's office and when they asked for my symptoms, they laughed saying, "You're clearly hypothyroid. Don't worry though, we'll get you all fixed up. You're not going to balloon or anything. You're not in danger. You don't even have to come to the office. We'll get you on a small dose of Synthroid (synthetic thyroid hormone) as soon as possible."

They explained that one of my thyroid hormones was just under the normal range and the other was in the low-normal range. Patients who are diagnosed with hyperthyroidism for a long time often suffer tremendously when their hormones dip to low-normal ranges. The symptoms can be very severe. I was warned of this, and the possibility that the hormones would drop so suddenly that I'd be slurring my words and forgetting my name. Thankfully, this was not the case. I was simply tired and didn't want to eat.

My thyroid stimulating hormone (TSH) was still suppressed, but this is typically normal for a few months. It takes months for TSH to regulate. *Quick, easy science lesson: Thyroid stimulating hormone is released by the pituitary gland in the brain and tells the thyroid whether it needs more hormone or less. When TSH is low, the pituitary gland is telling the thyroid to slow down production. When TSH is high, the pituitary gland is telling the thyroid that more hormone is needed. A patient with Graves' Disease has an antibody that mimics TSH. So, the antibody tricks the thyroid into thinking it needs to produce more hormone. Anyway, my TSH has been suppressed from day one of my diagnosis. It has never changed.

The relationship between the pituitary gland and an overactive thyroid. http://theawkwardyeti.com/tag/thyroid/

My endocrinologist's office sent me a packet with information on hypothyroidism and Synthroid (aka Levothyroxine). My doctor ordered a low dose of Synthroid (50mgs a day) for me and wanted to monitor my blood work after a few weeks. I was asked to stop taking heart medicine. I remember hanging up the phone and thinking, "Okay, the doctors didn't hit the sweet spot, Ill be on pills for the rest of my life. I have to be okay with this. This is for my future and my current health. You can do this." I had my moment of disappointment, then let it go. "I am healthy."

My Synthroid pills

I decided to eat a vegetarian diet temporarily while my metabolism was low, consuming less calories than normal. For a couple of weeks, I ate very small portions and I surprisingly didn't gain any weight from being hypothyroid for that short period of time.

I was instructed to take Synthroid as soon as I woke up in the morning with a big glass of water and wait half an hour to an hour before breakfast to allow it to absorb properly. I woke up so early every morning worrying that I had to take my pill. I obsessively took it and drank a bottle of water, then waited 90 minutes to 2 hours for breakfast. I knew that after time, I'd learn to get used to it. The hypothyroid symptoms slowly faded.

I met my now boyfriend in late February and we began our relationship in early March. I started going out of the house more, nearly every day. It was something I wasn't accustomed to at all, being so home-bodied and always so anxious about whether or not I would feel sick. A few times in the first couple of weeks, I would feel weak enough that our fun plans needed to be changed to something relaxing and closer to home. Slowly however, the anxiety dissipated and I was able to push through weakness and discomfort.

My "I'm finally healthy" vacation. 
My parents gave me a trip to Florida as a gift to celebrate my health and overcoming years of sickness. I was excited to have my Grandmother and cousin tag along. The 3 of us flew to Orlando and stayed with family. I had never been to Florida. I was finally healthy enough and I felt confident to travel. When I stepped off the plane and felt the heat and humidity, it was one of the happiest moments of my life. The half hour drive to my Great Uncle's house was beautiful, full of greenery, palm trees, and flowers.

The palm trees outside my Uncle's house

Our trip was 8 days long. The first thing on the list to do... DISNEY WORLD. OBVIOUSLY! My cousin and I went to Magic Kingdom. It literally was the most magical place. I felt like I was a 5 year old all day, wide-eyed and unbelievably happy. Not once did I think about my disease. I didn't think about anything all day except my desire to meet Mickey Mouse, which I did!

Disney World

The days after were spent enjoying time with family, eating a lot of food, shopping in Orlando, trying aerial yoga for the first time, heading to the lake at night with flashlights to look for alligators, participating in Paint Nite at a local bar, and going to the beach.

I enjoyed myself so much. The flight home was bumpy, but I felt refreshed, even stepping outside in the freezing cold. I felt ready to take on the world. I wanted a job, I wanted a life. This trip was the confirmation that my race was finished, and a new race was about to begin.

New tests.
I only felt good on Synthroid until about 2 weeks after my Florida trip. I had the strangest feeling that it was not the right medication. I did a small bit of research and found that many hypothyroid patients feel better with natural hormone treatments (like Armour Thyroid which contains sources of T4 AND T3 hormone replacement, unlike Synthroid which is just T4). When I had an appointment with my endocrinologist to discuss it, I went with boldness. I have experienced situations where doctors and specialists have bullied me into doing exactly what they prescribe, with no conversation. At first, my endocrinologist was tough, but then he relented. He spent a lot of time in my exam room, coming up with ideas. He got very quiet and pensive. He then sat at his computer and stared at my blood work results from the most recent and went back years in his files. "Your TSH is still suppressed and always has been suppressed from day one. Let's do nothing for awhile. Get off Synthroid. Let's wait to see if your TSH goes up and then we will put you on replacement hormone." He gave me a script to have another thyroid uptake and scan at the university hospital, just to see what was going on.

May's uptake results show hyperthyroidism

Radioactive scans of thyroid from May

I was pleased, despite the results of the thyroid uptake and scans. I got off Synthroid, and within a few days, I started to feel better. From then on, I've been feeling better and better.

Proof.
If I ever doubt that I'm healthy, the proof is in my amazingly eventful spring and summer.

During my spring and summer, I was in two nasty car accidents that I walked away from without a scratch, I received a promise ring from my boyfriend, I've been on overnight and day trips, I've visited planetariums, casinos, museums, explored wineries and hiking trails, spent time with friends, enjoyed food at new restaurants, celebrated by 28th birthday in Mystic, CT, been to weekly public yoga classes, practice acro yoga often, bike 3-4 times a week, and am currently planning future trips.

My best friend surprised me with tickets to see 'Lord of the Rings: the Fellowship of the Ring' at Lincoln Center in New York City, projected on a big screen with a full orchestra playing the score. Everyone who knows me, knows I love film music, and I always desired to be a film composer. After the show was over, my best friend and I met Howard Shore, the film composer himself. I met my idol!

Howard Shore and me

I went to New York City to participate in International Yoga Day. 15,000 people and I did a yoga practice in the middle of Times Square.

NYC International Yoga Day

In June, I went to an intense 3 day ashtanga yoga workshop led by the famous yogi, Kino McGregor. We learned about the yoga sutras in a lecture, had a two hour class on the ashtanga yoga primary series, a class on digging deep in our core to lift our bodies off the ground, and a class on inversions. It was the most challenging thing I've ever done to my body.

Me and Kino MacGregor

I've been seeing new places, doing new things, and I'm finally being spontaneous - something I never expected of myself. I have found a fabulous balance in my life, of which I am so proud. I keep getting excited to learn and experience new things, since this is truly the first time in 8 years that I am able to do anything. Perhaps it sounds like the rantings of a spoiled brat, but I've never been happier. I'm FINALLY healthy enough to live my life. I'm FINALLY healthy enough to enjoy myself.

I have discovered what is healthy for my body with my diet, my exercise, and my rest. I meet with a psychologist and a life coach to keep my mind healthy and to have accountability. I have a desire to be creative for the first time in years. I have a deeper passion for God and I want to be in His will, and do what is right.

Medical update. 
The last time I saw my endocrinologist, he walked into my exam room, and stared at me with a sarcastic and scornful look. He said nothing. I started giggling. I was sitting in one of the two chairs, he came over, and plopped next to me, sighing. In his thick Russian accent he whined, "I have no idea what to do with you!" We both laughed. He said, "I don't understand how 2 radioactive iodine treatments did not kill your thyroid gland. You have one of the most active glands I have ever seen and it must've been much larger than anyone expected. The treatments worked anatomically, because your thyroid is no longer enlarged, however it should have stopped producing too much hormone. I have asked other endocrinologists what to do, and they have no idea either. Are you feeling okay?"

I truly appreciated his vulnerability. He honestly had no idea what to do with me. It takes a lot of humility for a very highly rated and seasoned specialist to say, "In all of my years, I have never seen this before and I have no idea what to do." He actually cared about how I felt and was trying to come up with a solution for me. I told him, "If it is any consolation, I feel wonderful, so I owe you a big thank you." He apologized many, many times. He said, "If we do another radioactive iodine treatment, it will be enough for a thyroid cancer patient in total. It will throw you into severe hypothyroidism and you will not feel well. If you do surgery, it will do the same thing. I don't know what to do. Do you want to wait and see if anything changes?" I agreed.

I waited 6 weeks and did blood work. The results were abnormal. One hormone is in the normal range, and the other is too high. My TSH is still suppressed. I am technically hyperthyroid yet again. I had an appointment with my endocrinologist scheduled in late August but it was canceled so I could come to an emergency appointment this week. We need to figure out what to do.

Next steps. 
I am just as confused as my specialist. I am not sure why things have worked out this way. All I can say is that I am advocating for myself and the health that I am currently feeling. Why would I destroy this amazing feeling with radioactive treatment that makes me sick and tired for a month and a half OR with surgery that would require recovery and inevitable medication?

I feel good. I feel better than I have in nearly a decade. I have a healthy opinion of myself, striving always to be better. I love myself to the core. I am, in my mind, the pinnacle of fitness, the quintessence of wellness, and the epitome of health. It sounds pretentious, perhaps prideful, but everything I do, I do to ensure that I am healthy: mind and body. It is empowering.

I am ready for the next chapter. In this entire 8 year process, I have learned that whatever is going to happen is in God's hands. If He wants to heal my body, then so be it. If He doesn't, I will still worship Him and my life will no longer be on hold.

I know many people who have said in the midst of death and terrifying diseases like cancer and lupus disease, "It's in God's hands. I don't worry about whether or not I will be sick. If I'm sick every day for the rest of my life, I will still worship God, and I will be content." I always thought these people were lunatics. I never wanted to settle for a sick body. Now, I understand. Whatever happens, will happen, and I will be content (or at least try!) and I will still worship and thank my God every day.

"Not that I was ever in need, for I have learned how to be content with whatever I have. I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty of little. For I can do everything through Christ, who gives me strength." Philippians 4:11-13 (NLT)

The Breakers Mansion, Newport RI. July 2015

Be blessed and be well,
J

The Butterfly in my Throat : Good things come to an end

A day at the beach. Summer 2014

The Greatest Summer. 
It was the happiest summer of my adult life up until that point. I was enjoying the company of friends, meeting people, making new friends, going out a few times a week, spending every day outside, getting stronger, and living a healthy life. I felt that I had a sense of adventure. I was doing things that I had never done before, simply because I stepped out. I was experiencing new, amazing things. 

Horseback riding. Summer 2014.

I was also job hunting and preparing for the coming autumn months, hoping that I'd be working by then. I even started to dream again. I envisioned myself in a cute apartment with a decent job, writing music in my free time, finishing my masters degree and becoming a yoga teacher. I felt I was on the brink of independence and freedom. 

I remember having a long chat with a friend of mine on the phone. He said, "Maybe you feel better and you're happier, but you actually are responding to me faster and better. It is like your brain is working to full capacity now!" I laughed and teared up. It was a wonderful thing to hear. Full body health!

Yoga practice. Summer 2014.

Once mid August rolled around, life got a little complicated. My Grandfather was getting very sick and was deteriorating quickly, my cat got injured and almost died, two infant kittens that my family rescued died, and I was struggling with the seemingly nonexistent future of my romantic relationship of nearly 3 years. Stress definitely gnawed at my family and I, but we managed. I had some wonderful support from dear friends and family. God was faithful. 

All good things must come to an end, I guess? 
With thyroid treatment, the goal is to destroy the gland enough where it cannot function on its own anymore. Daily synthetic thyroid hormone would be needed in that case. I expected this result from day one. I hoped that the doctors would hit the jackpot and my thyroid would be balanced; just enough where I wouldn't need medication every day for the rest of my life. Of course, that is a super rare situation. 

Destroying a hyperactive thyroid and treating it as a hypoactive thyroid is safer and apparently easier. There is less risk. (With hyperthyroidism, long term problems are always an issue. Heart problems, osteoporosis, issues with pregnancy, and long term antithyroid drugs cause a slew of other issues as well. There are no long term side effects of synthetic thyroid hormones). I was told that it could take a long time for my thyroid to finally become hypothyroid. It was 4 months and I did not have any symptoms of hypothyroidism yet. 

Early September rolled around. I felt good, but I thought that allergies were really plaguing me. I felt pretty tired, hazy, and a bit foggy. I also thought that my thyroid hormones were possibly dipping too low. The time for blood work testing came and a follow-up appointment with my endocrinologist. My heart rate was resting at 120bpm when they took my vitals at the appointment. My blood work results were reviewed. "You're hyperthyroid again."  What I wouldn't give for it to just have been allergies!

The treatment was not enough. The nuclear medicine doctors had not taken into account the size of my thyroid. It had metabolized the radioactive iodine much too quickly for it to have worked sufficiently. "You have to go back on an antithyroid medication and make a decision about whether to do radioactive iodine treatment again or have surgery to remove the gland." I remember my doctor said, "Smile! You look so upset. You're going to be okay. I'm sorry."

On the drive home, I didn't think about anything. I didn't feel sorry for myself. I didn't feel empowered. I felt nothing. I think I may have cried a little when I got home. I felt so defeated when I stopped at the local pharmacy to pick up my antithyroid medication again. I was on methimazole and a beta blocker again. Same pills from 5 months earlier. 

I thought that by 2015, I'd have a life. A job, an apartment, dreams fulfilled. All of it was on hold again.

Biking with my cousin (right)

Despite the news, I still had just enough energy to enjoy myself. I went to faires, spent time with friends, and still felt a sense of adventure. Anxiety tried to creep in, but everything I felt, I had felt before. I knew all of my symptoms well. I knew that I wasn't in danger. I tried my best to ignore them. I tried my best to enjoy myself. Treatment, although insufficient, was enough to make my life more comfortable. It had helped.

Me (right) sliding with my Mom (left) at a faire

Me (right) and a friend (second from right) at a Renaissance faire

Me (top left) with friends and family at an Apple Harvest Festival

Life Changing October.
All of my symptoms returned, but not to the same severity. My goiter returned, albeit not as large as before. My eyes bugged out, though they were not as prominent.  

Within a couple of weeks, my life changed entirely. I was having nightmares constantly and feeling deep panic and stress. One night, I woke after a nightmare with an intense feeling that I needed to ask God's forgiveness. In my frustration during all the years of disease, I had blamed Him many times. I said many things to Him out of anger. I felt a desire to be closer to Him. It was a very healing moment for me. 

After months of debating and feeling a divine push, I decided to end my romantic relationship of 3 years. A couple of days after, my Grandfather was put in hospice care. A week later, he passed away.

My Grandfather and me

I spent most of my autumn with my Grandmother, my family, and my best friend. I went on a few dates here and there, met a couple of new people, and spent more time out of the house. I decided to do another radioactive iodine treatment. 

I began to prepare myself. I started an ashtanga yoga practice (6 days a week) to challenge my body in new ways and build strength before my treatment inevitably wore me out. I was the strongest and most physically fit I had ever been up until that point. 

Preparations.
The treatment was to be done at a university hospital. (The last treatment was done at a local hospital). I needed to be on a low-iodine diet for 2 weeks and off my antithyroid medications for at least a week. I was scheduled for tests and scans. The treatment was scheduled for January 9. All of the preparations needed to happen during the week of Christmas and New Year's Eve. 

There are few things more frustrating than going on a low-iodine diet during the Christmas season. (Low-Iodine Diet) No egg yolks, no dairy, no salt, no seafood, no soy, no chocolate, etc... THERE IS SOY AND SALT IN LITERALLY EVERYTHING. My family prides themselves on making amazing European foods and desserts. Needless to say, I was miserable. However, I took the diet extremely seriously. I wanted this treatment to work. I bought only organic food and refused to eat anything that I did not cook myself. I remember spending the afternoon with my Grandmother one day. She tried to make me lunch and I kept refusing. She ended up making a salad but was mortified when she couldn't season it with salt. She even froze her homemade Christmas desserts for me to have when my diet was over. 

I made quick oats every morning for breakfast with banana, raw nuts, raisins, and honey. I ate a salad with poached egg whites for lunch, and quinoa or basmati rice, steamed vegetables, and sometimes I added a very small amount of organic chicken for dinner. I cooked a lot of food in vinegar to imitate saltiness. Consequently, the diet made me feel so good, but the level of deprivation was beyond irritating. Everyone around me was eating pastries, baklava, rice pudding, and cookies. I was mostly annoyed that I couldn't eat cheese, which is my guilty pleasure! 

I left this note on the fridge to remind me: 

My cousins and I took a spontaneous trip up to Boston a few days after Christmas, where we met up with some friends. I had to pack a backpack with a day's worth of food in it because I could not trust eating at restaurants. It is not recommended that one eats out on a low-iodine diet. I had a lovely time, but on the way home, I was so hungry that I HAD to stop at a gas station for something to eat. Thankfully, they had coconut chips with no salt! 

Me (bottom left), cousins, and friends in Boston

New Year's Eve. 
I was planning on taking a solo trip back up to Boston to celebrate New Year's Eve, but I was off my medications, and traveling made me really anxious. Although I was not feeling as uncomfortable and sick as I expected, I still felt so tired, worn out, and foggy. I felt too sick to drive long distances. I hoped to enjoy my New Year's Eve. The last one was spent sick in my pjs, crying, and writing goal lists. I needed something more. I needed a celebration to remind me that my life was going in a better direction. 

Two friends from Boston surprised me for New Years and came down to my neck of the woods, got a hotel, and we had a little personal party. We watched a funny movie, played a game, ate snacks (I had to bring myself raisins, unsalted nuts, and raw vegetables) and we watched the Times Square ball drop. I finally had a celebration! I was so amped up for 2015. 

Treatment.
My radioactive iodine treatment was quickly approaching. Before my first treatment, I had hoped that the doctors would find that super rare, sweet spot where I wouldn't need synthetic pills for the rest of my life. Come second treatment time, I wanted the doctors to nuke my thyroid so much that no piece of it existed. I really didn't want to do this again in the future and a single pill a day was fine with me. With hyperthyroidism, I took many supplements on top of my 5-6 prescribed pills a day just to manage symptoms. Melatonin to help me sleep, colostrum to help my immune system and joints, glucosamine chondroitin for joint pain, Zylet for dry, inflamed eyes, natural supplements for thyroid function... From all of that to one pill a day is a miracle. 

My pills & supplements. Photo from January 2015

The week of treatment, I headed up to the university hospital to take a small dose of radioactive iodine for tests. 4 hours later, I returned to the hospital to have a thyroid uptake done. (A thyroid uptake measures thyroid function). The next day, I returned to have a 24 hour thyroid uptake and to be scanned. The rules and procedures were followed very strictly at this hospital. I couldn't have any liquids brought into the exam rooms with me. I was asked to urinate before being seen by the doctors to eliminate any radioactivity in my bladder from showing up in the scans of my neck. Everything was so spelled out. I deeply appreciated all of this. I felt like I was in better hands.

January's uptake results showed a very hyperactive thyroid

Thyroid scans: Jan 2015

2 days after my scans, I was on my way to get my actual treatment dose. I went alone this time. Worlds were different from treatment day May 9, 2014 and treatment day January 9, 2015. I had less fear, less anxiety, a lot of support, so much peace, and I felt God's divine presence near me the entire time. I always held onto the reins so much with my disease. With treatments like this, where the outcome is not always known and the timing is always random, you have to live presently and let things happen. Let go of the control, let God do what He will, and just be. 

This time, the dose was bumped up to 15 millicuries (11 last time). I wasn't nervous, but once I was led into the nuclear medicine department's room next to the lab, I got a little jumpy. The technician gave me a brief lesson on radioactivity, and even used a Geiger counter to explain how far away I will have to stand from everyone around me for the few days following. Doctors and technicians filtered into this tiny room, shaking my hand, giving me the rundown of the days after treatment. Same as before: Suck on sour candy, drink a lot of fluids, stay an arm's length away from others, flush the toilet twice, do laundry separately, keep my toothbrush in my room, spit close to the drain, use disposable plates, utensils, and cups, keep on the low-iodine diet for 2-3 days longer. 

I was given gloves to wear and a bottle of water. The pill was brought out in a little tube. I remember shaking a little bit as all the doctors and technicians watched. I stared at the pill for a few seconds and then a technician said, "You need to take that now because you're exposing us all to radiation." I said another super fast prayer to myself and took it. I got a ton of good lucks after that and was sent home. 

I felt relieved. I was happy. I was ready for the next few days and prepared for the next month. 

Post treatment.
From the hospital, I drove to the store to pick up lemons and sour candy. That evening, I started to feel neck pains and I loved them: a sign that treatment was ALREADY working. I was perfectly pleased. 

Sucking on a lemon to stimulate saliva production

After a couple of days, the worst side effect I was feeling was exhaustion. I allowed myself to rest as much as possible. I did not feel the same level of discomfort that I had during the first post-treatment process, so I was happy. I was also able to get off of my deprivation diet. I remember eating a tortilla chip and being so disgusted by its saltiness. Everything was too salty for about 2 weeks. 

3 days after treatment, I took these photos for reference. My neck was so much smaller. My trachea could actually be seen for the first time, and in a side shot, one could barely see a goiter. 

Throughout January, I felt very tired, but had just enough energy for my home yoga practice 4-6 days a week. I went out with friends occasionally, but mostly, I just rested. By late January, I posted this photo to social media with this caption: 

"Suck it Graves Disease, I have a human sized neck."

In early February, I noticed that my neck moved when I swallowed liquid. It was the first time in 7 years. I actually took video because I was so excited!

Be blessed and be well,
J

The Butterfly in my Throat : Radioactive Iodine Treatment

Photo from late March 2014

April. 

April (2014) was a nightmare. I was so busy. I had appointments with doctors 3 times a week (some appointments were unrelated to Graves and just happened to fall in the same month). I was so overwhelmed that month. I was so exhausted.

Committing to anything was challenging. My favorite yoga teacher (Yoga with Adriene mentioned in earlier blogposts) announced that she was coming to New York City in April. She set up a class and a meet and greet. I did not want to miss it, but the nagging discomfort of my symptoms and disease gnawed at me. I was on and off my medications the entire month, and I was so afraid of getting sick in the middle of New York City. With encouragement from Adriene's community of yogis on Facebook, I got the courage to go. It was my first public yoga class ever. I laid out my yoga mat in the back of the studio and in the first posture, we were instructed to lie flat on our backs. My entire body went completely numb because I was so full of anxiety. Once the class started, I was able to find ease and comfort. I enjoyed my time so much! I met with Adriene and some fellow yogis. Of course, once I returned to the car, I got a terrible headache and felt sick. Nevertheless, this event was a remarkable beginning to building my confidence and fighting through the symptoms of my disease. 

April 13, 2014. Yoga with Adriene meetup in NYC

"The breeze of grace is always blowing - catch that breeze J!"

Earlier in the year, I was feeling motivated and in an effort to get the ball rolling in my life, I joined a local choir, despite feeling sick. Our big performance was at the end of April. Rehearsals were a few times a week and on weekends. I remember feeling slightly uncomfortable and full of anxiety every week, but I stuck with it hoping that it would help prepare me for a real life and real responsibilities. On the day of the concert, I was feeling perfectly content until I stood on stage and the first few measures of the music started. Immediate panic rose up in me from nowhere, it seemed. Instead of reveling in all the months of hard work for this final, beautiful performance, I shifted uncomfortably in the risers talking myself out of jumping off the stage and running to my car. Through prayer and lots of deep breathing, I managed to make it though the performance. I left in such a hurry and was so relieved to make it home. It felt like such a waste. I didn't even enjoy it. This was my life. I never enjoyed anything.

Photo of goiter from April

Graves' Disease eyes from April

Tests and Scans. 

I needed a thyroid ultrasound, a thyroid uptake and a scan. To get an accurate result, I was taken off of my medications for at least a week. I remembered how sick I was in the fall after being off my medications for a week. My heart was jumping and racing. I was not looking forward to this. 

From 50mgs of Methimazole a day to nothing: I was feeling it. I couldn't think straight or focus well. I was quite despondent, nervous, easily startled, and full of anxiety. I always felt under the weather and achy. I was getting intense mood swings. I would be perfectly content and within seconds, be full of screaming tears and self destruction. One night, I was reading and noticed that I was struggling to see straight. I read and reread the same paragraph 10 times. Then, I started feeling that something was not "right." Within 20 minutes, I had a full blown migraine complete with vision loss, confusion, slurred speech, tremors, anxiety, loss of feeling all over my face and arms, and of course, the worst pain radiating through my head. Like a small child, I slept in bed with my parents that night. I was scared.

Last Methimazole pills before treatment

My best friend came with me to the hospital for my tests. I did my ultrasound. It showed a very large thyroid with good blood circulation. I also did my thyroid uptake and scan. I took a small dose of radioactive iodine and the next day, the amount of radiation in the gland was measured. If the gland soaked up a large amount of radioactive iodine, then it was severely hyperthyroid and only a small dose of radioactive iodine treatment was needed. The logic is that the thyroid works with the treatment. The faster it metabolizes the iodine, the better the radiation will be soaked up, destroying thyroid cells. My thyroid had soaked up a lot of the radioactive iodine according to the nuclear medicine doctors, so I wasn’t required to take a large dose for therapy; only 11 millicuries. (For reference, thyroid cancer patients are often given around 150 mCi). I was given a radioactive tracer shot, with some terrifyingly orange liquid inside and was scanned. The scans showed an abnormally large gland. I was scheduled for radioactive iodine treatment a few days later.

Thyroid uptake: 83% and scans from April 2014

Here is a photo for comparisons: 

Source: http://fitsweb.uchc.edu/student/selectives/Luzietti/Thyroid_diagnostics.htm

Treatment day.

May 9, 2014. I woke up feeling a lightness about my decision. I was somewhat nervous, but felt like I had made the right decision. I dragged my entire family to the hospital with me for support. The pill was waiting for me in a little cup. I took a little photo of it. In my spirit, I said the fastest prayer of my life and took the pill. No going back.

My Radioactive Iodine Treatment Pill 

After the very short hospital trip, I asked my family if we could go out to eat. It was a very welcome calorie packed, greasy cheeseburger mess that I enjoyed immensely. It was followed with ice cream. In my heart, it was a celebration. I felt that I finally had a future. I finally felt that I had made the appropriate decision for my health. 

The few days after... 

I was told to drink a lot of liquids, suck on a lot of popsicles, and eat sour candy to stimulate saliva production for the next few days. This was to prevent any damage to the salivary glands from the radiation. I had to stay over an arm’s length away from everyone for 3-4 days, flush the toilet twice, spit as close to the drain as possible after brushing teeth, keep my toothbrush in my bedroom, only use disposable cups, plates, and utensils, and do my laundry separate from the rest of the family. 

My family surprised me with this little sign on my bedroom door

A day after treatment, I began to feel pains in my neck. They were both dull and shooting pains, but not enough to warrant any OTC painkillers. I had only one passing moment of regret: I had done something that I could not reverse. The moment was fleeting and I got over it quickly. My decision was true and healthy. 

After 2 days, I was starting to feel very strange. I could not think straight and I could barely leave my bed. I’ve never felt so internally exhausted in my life. I remember going with my family to the local greenhouse to buy flowers for Mother’s Day simply because I was too afraid to be left alone at home. I felt like I was walking around that greenhouse like a zombie. I slowly pressed forward with no motivation, spacing out, eyes glazed over, feeling like I just finished a marathon. There was not a single thought in my mind that would complete itself, except for, “I think I’m going to pass out.” That was lowest point of the post-treatment process. 

In the days following, I had moments of darkness and discomfort, but I knew it was part of the process. I had hope that healing was coming soon. I wrote this in one of those moments: 

“When you feel sick and miserable, it’s hard to see the light at the end of the tunnel. It’s hard to feel like this is the homestretch. It’s almost over... just a little more time. After 7 years, you’d think a couple more months wouldn’t feel like a difficult, seemingly impossible task. Right now, I feel very in the present moment - something for which people strive. I’m just too tired to think beyond the headache, the fogginess, the general malaise, the weakness, the lethargy, the neck pain.” 

Following up with my doctor 5 days after treatment. He said that progress was starting to show already.

A week later... 

I had planned on having a tag sale to sell some old, unnecessary things the week after treatment. For a couple of days, I went through every closet, the attic, and the garage. I thought I was being foolish, but I had just enough energy to gather all the appropriate items. On tag sale day, I was outside from early morning to late afternoon, and had no trouble with fatigue. I got so sunburnt for the first time in years that day. Sunburns and tans were something I rarely experienced while on antithyroid medications. I was tomato red, but I actually welcomed it! It was part of the evidence I needed to see that my body was working properly. 

A month later... 

I was starting to gain some more energy. I was starting to exercise more, I was eating clean, and I was enjoying my newly discovered health. I was losing a healthy amount of weight for the first time in years. I got a phone call one day in June that my T3 and T4 hormones were in the normal range. TSH (thyroid stimulating hormone) was still suppressed, but it was expected since it takes many months for TSH levels to change. (Here is some more information to learn how the thyroid hormones work: http://www.endocrineweb.com/conditions/thyroid/how-your-thyroid-works) It was a wonderful phone call  with happy news. I danced around my room that afternoon and posted this collage photo to social media: 

Celebrating my blood work results!

Two months later... 

My neck was slightly smaller, my trachea was visible for the first time in 7 years, and my eyes did not bulge as much as they did months before. It was not as dramatic of a change as I had hoped for, but change was still evident and I did not complain. I was happy. I was not on any medications. I felt amazing and strong. I was exercising often, I was doing intermediate power yoga practices daily, I was eating so healthy, and even was talking with a life coach weekly about how to honor my needs and how to start my life again. 

July 2014. Worlds different from the late March photo above!

On July 14, I had an appointment with my specialist. He walked into my exam room, stared at me with a look of pride for a moment and said, “So I bet you feel good, huh? You listened to this old man! I TOLD you the treatment would work! Soooooo... how’s life?” In his examination, he said, “You are one healthy girl.” He listened to my heart and said, “Now, that is music. It’s music.” It was the happiest doctor's appointment of my life. I was so blessed and so full of hope. I felt my life was finally beginning. 

Summer yoga practice - getting stronger every day!

Be blessed and be well, 

J