Losing My Butterfly

The thyroid is a butterfly-shaped gland that sits at the base of the neck. Ironically, Vanessa, in Greek, means butterfly.

Two years ago yesterday, on April 2, 2013, I was diagnosed with thyroid cancer and lost my butterfly. I remember the day so vividly, yet not at all. I was going to meet a friend whom I used to work with for a late lunch. I hadn’t received my biopsy results yet and I was getting anxious. It had been over a week and all I could get from the lab was a message to call my doctor. I called my endocrinologists’ office that morning and they said they would check for my results. When I didn’t hear anything later that day, I called again. The receptionist told me that the doctor had an appointment available at 3:15 p.m. and he would review the results with me. I knew instantly that the news would not be good. I called my friend and canceled our plans.

I still remember hearing the words from my endocrinologist’s mouth as he quietly whispered that I had papillary thyroid carcinoma. At first it didn’t register. I didn’t hear the carcinoma part, and quickly thought to myself, “Well, at least I don’t have thyroid cancer.” I may have even cracked a smile. I can’t remember the exact details after hearing the diagnosis.

My endocrinologist sat patiently in his chair waiting for my reaction. He spoke softly for what seemed like an eternity, but in fact was a little over an hour. It was probably the longest amount of time I had sat with a doctor as a patient. Weeks earlier he had told me I would need to be on Synthroid for the rest of my life due to an under-active thyroid. I tried hard to fight back tears. He noticed, and offered to do another blood test to be certain. I was temporarily at ease. Now that that was no longer an option I couldn’t even bring myself to cry.

I sat motionless on the examination table as he gave me all of my options, daydreaming about more pleasant things. Occasionally, my thoughts drifted to questions: Whom would I call to break the news to first? How would I tell my grandmother?

Then I focused. We talked about a partial thyroidectomy, but a total thyroidectomy was more advisable. He provided me with a list of surgeons in the area and in New York City. I didn’t know where I wanted to have surgery or which surgeon to see. His parting words to me were “not to make a research project out of this.” I had no clue what that really meant.

Fast forward two years and I live with an invisible illness. Thyroid-less and cancer-less, I depend on my daily Synthroid to get me through the day. When people learn I had thyroid cancer they tell me how great I look. I appreciate the compliment, but nobody knows how I really feel. Despite 10 hours of sleep on most nights (12, if it’s a weekend), I awake feeling like a zombie. No amount of coffee can counteract the grogginess, nor can a higher Synthroid dose that should technically give me more energy. There are many days where I wish I could implement nap time in my daily routine. Still, I am grateful that that is my worst symptom.

If I could offer advice to other newly diagnosed thyroid patients, it would be this:

1. Do your research: Find a good endocrinologist who will listen to you. This doctor will be your most important resource, and likely your doctor for life. Make sure you feel comfortable talking to him or her, and don’t be afraid to disagree if something doesn’t sound right. There are plenty of endocrinologists, so if one doctor is not a good fit, find another.

On the research front — read about thyroid cancer, undergoing a thyroidectomy, Synthroid and what to expect after surgery. The Thyroid Cancer Survivors’ Association and ThyroidChange (of which I am a supporter) are both valuable resources.

2. Ask questions: Just because your doctor went to medical school, it doesn’t mean he or she is always right. You know your body better than anyone, so always have your best interest at heart.

3. Utilize support groups: When I was first diagnosed I heard over and over that thyroid cancer was a “good” cancer or that if I “had” to get cancer, thyroid cancer was the one to get. I understand that people were trying to be supportive, but in 2015, approximately 1,950 people will die from thyroid cancer. I doubt they would agree that it is a “good” cancer. Support groups can be a helpful resource, and you can interact with people who are going, or have been through, a similar diagnosis.

4. Trust your gut: Here is where that “research project” line comes in to play. I did a ton of research — and I mean a ton! I saw four surgeons by the time I had concluded my “research” phase. Sure, it might have been overkill, but that is what I needed to feel confident in my decision to move forward.

5. Take time for yourself: Remember to breathe! It can be overwhelming going through a diagnosis like this, and hard not to get completely absorbed. Make time to see friends, go for a walk, or take a trip. It will help to clear your mind and you will make better decisions when you’ve allowed yourself some distance.