Death of a Butterfly (part 6)

 

THE THYROID IS A GLAND IN THE HUMAN BODY WHICH CONTROLS MANY OF THE FUNCTIONS OF YOUR BODY INCLUDING YOUR BODY TEMPERATURE AND METABOLISM. IT IS LOCATED IN THE FRONT OF THE NECK BELOW THE “ADAM’S APPLE” WRAPPING AROUND THE FRONT OF THE WINDPIPE. IT HAS TWO LOBES CONNECTED BY A THIN PIECE OF TISSUE IN THE MIDDLE GIVING IT A SHAPE SIMILAR TO A BUTTERFLY. BECAUSE THE SHAPE OF THE THYROID IS SIMILAR TO THE SHAPE OF A BUTTERFLY, THE BUTTERFLY HAS BECOME THE SYMBOL OF THYROID DISEASES INCLUDING THYROID CANCER. THIS IS THE STORY OF HOW MY “BUTTERFLY” DIED, HOW I SURVIVED, AND HOW I CONTINUE TO THRIVE. I HOPE MY STORY INSPIRES YOU TO THRIVE.

Losing My Thyroid: Part Six

I had been diagnosed with thyroid cancer and had two surgeries to remove my thyroid. The summer of 2012 found me recovering from those surgeries and preparing for the next step of my treatment: radioactive iodine therapy (RAI). RAI would serve two purposes: 1. It would enable my team to scan my body for wayward thyroid cells. 2. It would kill any thyroid cells that remained in my body.

My body was tired all the time. I had been through two surgeries and was recovering. I was taking a pill to replace the hormone my thyroid once made. I rode a 16 mile bike ride and attempted a 5k run. I didn’t do well on either and was frustrated. I vowed to keep improving and recovering as I faced the next step in my treatment. I also received loving advice from my support group of friends and family to be patient with myself and to be kind to myself during my recovery.

I approached the next phase of treatment with a mixture of optimism and anxiety. I met with the team in the Nuclear Medicine department and they drew blood to check my TSH (thyroid stimulating hormone) levels. Normal TSH is between 1 and 4. If you are under 1 then you have an overactive thyroid. If you are over 4 then you have an underactive thyroid. Mine was 12. I felt relieved.  It explained the sluggishness, the fatigue, the poor performance on the 5k. It explained the brain fog, the listlessness, the weight gain. It explained so much and it made me feel better to have an explanation.

I felt better until I learned the next step was to take me completely off my small dose of thyroid hormone and make me severely hypothyroid. This would enable the team to get a better scan. We needed to scan my body and look for thyroid cells. All thyroid cells would now be considered the enemy and need to be destroyed. I stopped my medication and began a downhill spiral into hypothyroidism. My symptoms were severe:

  • Brain fog
    • I had never before faced brain fog. It feels like it sounds: your brain is foggy. It takes longer to think. It takes longer to speak. You feel half-asleep all the time. No coffee lifts the fog. This probably wasn’t the best time to read Crime and Punishment, but I wasn’t moving off the couch, so I did. My husband and I spoke about this troubling symptom and he said he could tell it was taking me longer to process information, but most people wouldn’t notice. I felt it and fought it.
  • Body aches
    • My body ached as if I had the flu. These minor pains attacked me randomly throughout my day. My legs and arms seemed to ache the worst.
  • Muscle cramps
    • Along with the body aches, I would also have cramping of my muscles. Most often it was my leg muscles that would sporadically cramp.
  • Fatigue
    • The fatigue I had at this time was like no other fatigue I had ever felt. It was more than just being tired. I had to sit down and rest after taking a shower. Blow drying my hair was a monumental task. Once I was dressed, I would leave the house just to sit in my car and rest before facing the task of driving to work. At work, I struggled with having enough energy to complete my day. Once back home, I crashed on the couch.
  • Apathy
    • I really didn’t care about cycling, housework or even self-care during this time. All I really wanted to do was sleep.

 

If sleeping were a superpower then I would have been a superhero. During this time, I could sleep anywhere, any time and in any position. It was only a couple of weeks without the medication, but it felt so much longer than that. I returned to the CAM building of Barnes-Jewish and had my blood drawn again. My TSH needed to hit 30 in order to do the treatment. Mine was at 68. Great! I moved sloth-like through the phases of treatment.

I entered the nuclear medicine area which had the vibe of a college chemistry lab on Friday morning. Caution signs were posted everywhere. I was asked to wait in the one-chair waiting area. There I met Dr. Grigsby who is the head of the department. He is a nice man, who truly cares about his patients. We talked about gardening and he succeeded in making me feel calm for awhile.

 

Soon, a young woman came and escorted me down a brightly lit, tiled hallway. At various spots in the hallway bright yellow tape made rectangular shapes on the floor. We stopped at the doorway to a room and I was asked to step into the yellow rectangular area and wait outside the door. The young woman who wore a white protective gown over her clothes, gloves on her hands, and a plastic shield over her face entered the room. A couple of moments later she beckoned me to enter. I entered without any protective gear. I felt vulnerable as I entered the sterile room and sat on the hard stool provided. I was instructed to place my hands on my lap and touch nothing. I complied. I sat on one side of a stainless steel counter while the young woman stood opposite me on the other side. She instructed me to drink the liquid she would offer me without touching the metal glass or metal straw. She placed the metal cup on the counter and held the straw for me. I bent over the glass and took the metal straw in my mouth and drank the radioactive iodine. It tasted of nothing. I could feel the liquid in my mouth, but it had no flavor whatsoever.

After drinking the tasteless liquid, I was instructed to step back into the box of tape and wait. I did so. Then I was instructed to walk to the front of the room and sit in a chair. A geiger counter was pointed at the chair. It started making noises as soon as I walked in front of it. People came from various rooms and stood behind a counter about 10 to 12 feet from me. Dr. Grigsby and his staff were happy I was now radioactive. For once in my life, I had proof I was “hot.”

The team waved goodbye to me from behind the counter. There were no hugs or handshakes. RAI is a lonely treatment. So, waving goodbye I left with instructions to avoid spending time with children and pregnant women. I was advised to stay 3 feet away from people for all but short periods of time. I decided to spend the weekend in a hotel . . . alone. I spent the weekend laying in bed, reading, playing on the internet and sleeping. My husband spent the weekend at the criterium race. It wasn’t the most romantic anniversary weekend I’ve ever had.

My husband did come to see me Friday night, but maintained a 3 foot distance from me. I resumed my medication on Saturday, but needed his assistance in loading my luggage in the car Sunday when I returned home. I spent Monday at home then headed to the Siteman Center for my scan.

The scan required me to lay very still on a table for about an hour while the scanner moved slowly over me. Normally this would be a difficult task, but being hypothyroid made it easier. All I wanted to do was sleep. Once the test was complete, I headed downstairs to Radiation Oncology to learn my test results. They were “normal.” No lymph node involvement was found in my neck or elsewhere.  I was free to go.

I went. I continued taking my medication and riding my bicycle. A year later I. went through the same ritual: I was made hypothyroid and scanned again. Again, the scan was normal. Two years later, I was scanned again and the scan was normal. On the third year, I did not need to stop medication for the scan. The third scan was normal. I am now over 4 years cancer-free. I will have another scan at year 5. If that scan is normal I will be considered “cured.” I am hopeful it will be normal. In the meantime, I will continue working on developing a healthy lifestyle, loving my family and riding my bicycle.

Find the beginning of the story here

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