Monday, July 27, 2015

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.

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.

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,

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