This scar across my neck has started so many conversations and friendships. If you have been where I have been, you know what it means. My butterfly. An unspoken symbol of strength, courage and surviving.
Here's my story.
Fourteen years ago this month, on the 3rd to be exact, my life forever changed. My prayers had finally been answered...sort of. Let's rewind the clock a bit.
Headline photo: Guest blogger, Erneshia Pinder. Republished with permission from the original article on LinkedIn.
Fourteen years ago this month, on the 3rd to be exact, my life forever changed. My prayers had finally been answered...sort of. Let's rewind the clock a bit.
At the age of 18 I was rail thin. The unhealthy kind of thin. With modest access to healthcare, my parents were able to send me to an endocrinologist who said I had a hyperactive thyroid. He ran no tests and prescribed no treatment. He basically told me that eventually my thyroid would slow down and I may become hypothyroid. I had no idea what any of that meant. There was no Google back then so I just took what he said and went on my way.
A year later, I became pregnant with my first child and struggled the entire pregnancy. Morning sickness the entire time which I later found out is called hyperemesis gravidarum and is often present in patients with thyroid disorders. Each and every time I went to the ER for dehydration and contractions, the on call OB would remind me that pregnancy was not a disease and that I needed to suck it up and deal with it because it would be over soon. When my daughter was born, four weeks past my due date, it was only because my body was cleaning itself out. I later learned this was because my body didn't naturally produce enough prostaglandins for me to go into labor on my own. Another byproduct of a malfunctioning thyroid.
No one was putting the pieces together.
As time went on, I dealt with female problem after female problem. My husband had enlisted in the Air Force so I thought my odds would improve and I would be able to get better care. Not hardly. Countless visits, more tests and nothing. Thyroid levels always came back within normal range. I was on and off all kinds of hormone therapies, none of which worked. Finally, I had one doctor tell me to seek mental help because clearly my issues were all in my mind and I was wasting resources trying to get a diagnosis I would never get. Me a hypochondriac?
Emotionally I was a wreck. Perhaps she was right. Nevertheless, I persisted.
When my husband separated from the military and we moved back East, I got my first corporate job with good benefits. That's when I met the gynecologist that would save my life. On our very first visit, she felt my neck and told me my thyroid was enlarged. She sent me for tests and...SURPRISE! They were all within normal range. More of the same. This continued for the next 2 years or so. I was constrained by health insurance that required a referral to see a specialist and my primary care doctor saw no need for it. Thankfully, in May of 2006, I accepted a position with another company which came with better health insurance coverage. A PPO which afforded me the autonomy to see a specialist without a referral.
It was that same May when, during my annual exam, my GYN again felt my neck and noted that my thyroid had gotten bigger. She explained to me that because I had a PPO I could skip the lab tests and head straight to an endocrinologist. So that's what I did.
Living in the Baltimore area meant I had access to one of the best hospitals and specialists so I booked an appointment with an endocrinologist at Johns Hopkins Bayview Medical Center. The wait time was 3 months. I would be seen in September. No problem.
I thought this time would be like every other time. Tests run. Normal range.
I was wrong. Johns Hopkins Bayview was a teaching hospital so I had the benefit of being thoroughly examined by an endocrinology student and endocrinologist. I will never forget that day.
I took 3 sips of water. As I swallowed the student felt my neck. I took 3 more sips and the endocrinologist examined me as well.
Then he told me he felt nodules on both sides of my thyroid gland. My butterfly.
He explained that the nodules were very common in women and that there may be no need for alarm. However, he wanted me to have an ultrasound with the radiologist he worked with often and trusted. He set up the appointment which was a week later.
My daughters were out of school on the date of my ultrasound and I thought it would be neat and educational for them to see inside of mommy's neck. So the three of us made our way back to Hopkins Bayview and sat in the ultrasound room excitedly as the tech came in and started taking pictures. Then he said "Wait right here. I will be back." When he returned, he was accompanied by the radiologist. I thought it was strange but attributed it to being at a Johns Hopkins hospital.
The next 5 minutes felt like an eternity as the radiologist mumbled and said "biopsy." It was then that I started to get worried. Biopsy was synonymous to cancer for me. When he addressed me, he said he was pretty sure I had papillary thyroid carcinoma and would need a biopsy to confirm malignancy. He explained the biopsy process and then he said something I never thought I would hear a doctor say.
"At least you have the good cancer."
Is that even a thing? I was mortified but had to hold it together for my daughters. I have come to learn that this is something frequently said to thyroid cancer patients. It's ridiculous! It's unacceptable. I was completely angry at this doctor's "bedside manner." In hindsight though, I was a little grateful that his delivery meant I didn't have to wait weeks to learn the truth.
A couple of weeks later I had that neck biopsy which was one of the most trying things I have ever experienced. Six needles. Six specimens. They confirmed that my cancer was malignant. My thyroid would have to be removed.
I was 29 years old at the time. I didn't fit the "profile" of a typical patient. I still had it.
I survived. On November 3, 2006 I said goodbye to my butterfly.
I share this story every year for a number of reasons. One is to encourage people to advocate for themselves and to fight to be heard. Thyroid cancer is a slow growing cancer. When I was diagnosed, my doctor said mine had been there for awhile and would explain all of the issues I dealt with during the 10 years prior. The other reason I share is to raise awareness of thyroid cancer and to dispel the stigma that it is the "good cancer." There is no such thing. While the removal and treatment of my kind of thyroid cancer may seem simple, the physical and emotional aftermath is not easy to live with.
September is Thyroid Cancer Awareness Month. Please check your neck. I did. And because I did, I have had the pleasure of enjoying 14 more Septembers...and counting.
Erneshia Pinder is Program Director, Strategic Diversity Management at CVS. She is a passionate advocate and stigma fighter, blessed to devote her life’s work to helping remove the barriers that prevent many from seeking the help they need.