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 One
Cancer: I felt the word more than I heard it. My doctor was an amateur comedian, but today neither of us was laughing. He sat on a stool facing me; his face kind, but serious as he informed me of the diagnosis: thyroid cancer. My husband sat in a chair to my right. Processing: my brain tried to process the information, but it was working at the speed of internet explorer on dial-up. I looked into the face of my doctor. He was talking. What was he saying? He said he wished I didn’t have this, but if I had to have cancer, this kind was curable. I knew he was right, but I felt …what did I feel? Shocked. I never thought the diagnosis would be cancer. I had been calm through every step of medical investigation which had led to this moment.
This moment had been preceded by several steps of medical investigation; some more invasive than others. In the fall of 2011, I went for a routine visit to my doctor for Allegra to tame my unrelenting fall allergies. During the course of that visit my doctor began examining my neck. I sat still as he placed his hand on my throat and squeezed and prodded. He asked me to swallow. I complied. I felt vulnerable, but I wasn’t afraid. My doctor told me my thyroid was enlarged and there was a large nodule on the left side of my thyroid. He explained that most, over 95%, of thyroid nodules are benign, not cancer. He went on to explain that even though most nodules are not cancerous, we needed to do some more testing .
So, I went for an ultrasound of my neck. I lay on a padded table staring at the plain white ceiling while a technician slathered cold gooey gel on my neck and then ran a probe over my neck. I tried to watch the monitor; however, I could not see much. I left the office with no more knowledge than that with which I had entered the office.
A few days later, I returned to my doctor’s office to get the results of the test. The test confirmed my thyroid was enlarged with a large nodule on the left side of my thyroid. My doctor educated me on the extreme rarity of these nodules turning out to be cancer. He still wanted to be sure this nodule was benign. He sent me to nuclear medicine for a scan of my thyroid. This would be my first, but not last, encounter with radioactive iodine (I-131). Looking back, I wish I had journaled and taken photographs. At the time, I was reasonably sure the results would all be benign and these tests were all pretty much formalities. I was wrong.
I traveled to the nuclear medicine department of the local hospital unsure what to expect. I was given a small pill in a paper cup and told to take it. Swallowing pills has always been difficult for me, but it seemed that it had become harder over the past few months. I never connected that difficulty to my ever-enlarging thyroid. I took the cup and started to reach in and pick up the pill. “NO!” The technician freaked out a little. She instructed me to take it into my mouth directly from the paper cup, not to touch it with my hands or even let it touch my lips. “OK,” I thought, “So, I can eat this pill, but not touch it with my hands because that would be dangerous.” I complied and managed to get the pill down in about 3 tries. I was excused and given an appointment time for my return for the scan.
I returned for the scan and was met by a very courteous older male doctor. He had the most calming and reassuring manner. He spoke slowly, but distinctly. He was friendly without being overbearing. His movements were unhurried, but methodical. He spoke to me not at me. He asked about my family and my job and my interests and me. He seemed genuine and authentic and human. It warmed the otherwise cold atmosphere. It was cold both physically and emotionally. The lab was dark and filled with large ominous pieces of equipment. The doctor cautioned me to lay very still. I tried to imagine I was lying on a beach as the pictures of my neck were being taken. The time passed. I thanked the doctor for his time and left with no knowledge of what the results would be. I was very optimistic. This doctor assured me the majority of these nodules are benign. The odds were in my favor, but someone has to be in the minority.
I returned to my primary care doctor anxious to know what the scan had revealed. It revealed some “cold” areas in the nodule. “Cold” indicates cancer. My doctor assured me that the nodule was probably not cancer. “Cold” could mean cancer, but it was not a sure thing and since most nodules are not cancer the odds were in my favor. Still, we needed to be careful and he advised we do a fine needle aspiration biopsy. The appointment was scheduled and I left my doctor’s office curious, but not fearful. In my head, I heard one of my former instructors from optometry school saying, “Common things happen commonly. Rare things happen rarely.” I felt assured that I was having a common issue with my thyroid and not the rare cancer. Rare things happen rarely; oh but, they do happen.
I kept my appointment for the biopsy. I went to the local hospital with my husband by my side. I was unsure what to expect when the nurse called my name and I left my husband sitting in the waiting room. I followed her down the long hall to the procedure room. I was left alone to change into a gown. I felt nervous, awkward, and lonely. I wasn’t lonely long. I lay on the table as 2 nurses entered the small room. They were a blur around me as they went through their checklists. In a few moments the doctor entered the room and introduced himself to me. I have often thought how weird medicine is in the fact that this guy comes into the room and introduces himself and then does something invasive like sticking a needle in your neck and then you never see the guy again. That is what happened though. The doctor entered, introduced himself, explained what the procedure would entail, gave me instructions and then went to work. He used ultrasound to guide his placement of the needle so I was treated to more of the goo on my neck followed by some pressure from the ultrasound probe. Again, I was dismayed that I could not see the screen. Next, the doctor stuck a very long needle into my neck. I did not feel any pain; however, I could feel the tip of the needle scraping inside me as he moved it back and forth harvesting cells from the nodule. He took 5 samples. He hoped it would be enough and so did I. While the procedure was not painful, it was annoying. On the last scraping I had to fight the urge to hit the doctor. Something deep in the pit of my stomach was telling me to fight. It wasn’t bad advice.
The biopsy had been successful. The doctor was able to get enough cells in the few attempts he had made and further attempts to get more cells would not be necessary. The doctor could not tell me if the cells were normal or cancer. He could only tell me there were enough cells. The room emptied and I dressed. The nurse told me I was free to go and I made my way back to the waiting room where my husband was reading his Kindle. We made our way through the cold December rain to the car. I felt good. We went to the local waffle restaurant and had a late breakfast of eggs and waffles and coffee. I had plans of using the rest of the day to do household chores. The adrenaline in my body was gone before the car made it into our driveway. I slept the rest of the day.
A couple of weeks later, I returned to my doctor’s office to learn the results of the biopsy. I was sure the results would be benign. I sat there in the doctor’s office with my husband sitting in the chair to my right. The doctor came in and sat on a stool facing us. He said the nodule was cancer. Cancer: I felt the word more than I heard it. My doctor had just told me I had cancer. My doctor was always telling jokes, but today neither of us was laughing. He sat on a stool facing me; his face kind, but serious. My husband sat silent and motionless in a chair to my right. Processing: my brain tried to process the information, but it was working at the speed of internet explorer on dial-up. I looked into the face of my doctor. He was talking. What was he saying? He said he wished I didn’t have this, but if I had to have cancer this was curable. I knew he was right, but I felt …what did I feel? Shocked. I never thought the diagnosis would be cancer.
My husband and I left the doctor’s office and walked to our cars. We spent a few moments in the parking lot trying to reassure each other everything would be ok, but we were stunned. We embraced and then parted. He went back to his office and I went back to mine. I managed to make it through the rest of the workday, but found it difficult to be sympathetic to the complaints of dry eye sufferers and the newly presbyopic knowing I had cancer in my body. I made it through the work day and retreated to the safety and comfort of home.
Little did I know this was just the first hill on the roller coaster ride of losing my thyroid. There would be more hills and valleys ahead.