Four years ago this May my doctor started sending me for testing because she suspected something was going wrong in my thyroid. In May I had a sonogram. In June I had a CT scan then a fine needle biopsy. On July 27 I had a total thyroidectomy and two days later on July 29, I got the phone call from the surgeon and the diagnosis: follicular carcinoma. The diagnosis wasn't a shock to me. I had about six out of the eight symptoms that usually indicate cancer.Part of the post-surgical routine for a thyroid cancer patient involves letting your TSH (thyroid stimulating hormone, which is produced by the pituitary gland) get high enough to administer a radioactive iodine dose, which kills any remaining thyroid cells in your body. That means you go into a state called hypothyroidism. Everyone has different symptoms and handles the hypo state differently. For me it was not very pleasant. It's hard to know what your thyroid does until it's gone. It quietly goes about the work of regulating so many things: your body temperature, your heart rate and your metabolism. I missed mine almost immediately. I got extremely lethargic. I slept fitfully at night, but couldn't stay awake during the day. And one day I rolled over in bed and fell on the floor. My perception of where I was on the bed just wasn't correct. It basically made me gain weight, get dumb and move incredibly slowly. I can't attribute all of the weight gain to my missing thyroid, but that's another story.
Anyway, I went through the treatment. I had the RAI (radioactive iodine). I was able to start taking thyroid hormone replacement (Synthroid) daily shortly after that. I went back to work after eight weeks. Eventually I got to where I could make it through the day without needing a nap or resting. My TSH came back down and is now suppressed nicely. But that took months. And the psychological strain was really hard.
Hearing that their youngest child had a form of cancer was difficult for my parents. Much harder than it was for me to hear. It was especially difficult for my Dad. On some level I had known and getting the confirmation from the pathology report was expected. It's hard to watch your loved ones go through something like that. It's much easier most of the time to be the patient, not the loved ones. But it's hard to describe to someone how it feels to be diagnosed with a disease that will follow you the rest of your life. It was a delayed reaction. It was the following January when it hit me and it took me a while to come to grips with it. I have to stay on top of getting things tested and making sure that the cancer has not come back. I've accepted it. It's just a part of my life. But it didn't come easy.
I decided to attend the thyroid cancer survivor's conference in Denver in October 2005. It was a chance to meet other people who had been through the same things I had and to hear the country's thyroid experts discuss treatments. It was a good experience. My sister, Jenny, went with me and attended a couple of the sessions with me or on her own. It was a catharsis of a sort for me. And I was able to see that lots of people have had thyroid cancer and that it's rarely life-threatening. To celebrate this fact, I wanted to get a reminder of the tough times so that I'll always remember. But it was time to move on and get past it. I had lost quite a bit of weight by this time and I was ready to reward myself with something.
A tattoo seemed a perfect permanent reward. So before I went to Colorado I got the name of a tattoo artist in Englewood from my friend Heather who knows Chris J'Tot. He owns the Phantom 8 tattoo shop with his wife. I was lucky that Chris had an appointment available that Saturday.
I had already decided the tattoo should be a butterfly. The thyroid is a butterfly-shaped gland just at the base of the neck. So that was a no-brainer. The colors of the tattoo needed to be the colors of the thyroid cancer survivor ribbon: pink, turquoise and purple. They stand for mind, body and spirit, but I don't know which color is which. It needed to go on my right side because that's where the cancer nodule was. I chose to have it put on my torso so I could see it, but it's not visible on a daily basis to everyone I see. I left the decision on where to put what color to Chris. I think he did a fabulous job.
This photo was taken on the day it was done right after it was finished. Notice how angry and red my skin looks. It hurt a lot, mostly on the ribs.
So, there it is. The story of my tattoo. It has truly helped me psychologically. Not that I could ever forget that I had thyroid cancer, but it helps to keep it in perspective and remember that things are so much better than they could be. I'm lucky and I have a really pretty butterfly to remind me.
