Saved By Children’s Books After the Experts Failed
(Written by Donna, benign tumors, radiation exposure)
You never had a chance, did you, poor thing. When I was a baby, I had enlarged sinuses, and the treatment for this in the 1950s was massive, concentrated doses of radiation to the neck. My parents were presented with the choice of dead baby or irradiated baby-some choice, eh? As the first consequence of my Chernobyl-like blast, my teeth started decalcifying in fourth grade, much to my dentist father’s chagrin. That began a life-long dental issue with bonding, which continued until my teeth were all capped.
At 27, as she drove me to a hospital, my mother told me my thyroid history (which I did not know), and added that I was going to be tested for thyroid cancer. She went on to mention that before my parents went to England several months ago, they told MY story to my younger brothers, who would then clue me in in case something happened to them. They didn’t think I could handle the truth of my health issues. Of course, I was shocked and appalled. The test was administered and I guess I passed, because I was told that I had nothing more to worry about.
Fast forward about 20 years. I could feel that I had a lump in my neck and my local library was presenting a seminar on thyroid diseases, so I thought I might get some information. The doctor discussed hypothyroidism, hyperthyroidism, Graves, and Hashimoto, but nothing about massive doses of radiation. After the program, I talked to the doctor, who, upon hearing my story and looking at my neck, advised me to see an endocrinologist ASAP. I got a recommendation and after sonography and my first, exceedingly painful FNA, the doctor said that I had nodules, they were benign, and my real problem was that I had to lose 20 pounds. To this end, he wrote me out a prescription for the new wonder drug, fen-fen, which luckily, thanks to my insurance not covering it, I never took. As information came out about aorta problems, I shopped for a new endocrinologist. The next guy gave me an even more painful FNA and then sent my biopsy to a lab that didn’t accept my insurance. What fun THAT was! After that fiasco, I sort of gave up on monitoring you, even though the lump in my neck got bigger every year.
Which brings us up to the present. I attended the Library Conference in Chicago last August. A panel discussion on memoirs caught my eye, especially because one of the authors, David Small, was a Caldecott winner for his illustrations for children’s books. His memoir was a graphic novel entitled Stitches, which recounted his battle with thyroid cancer, as a result of being irradiated as a baby (!!!). This made me sit up and take notice. I had never met another one of my fellow sufferers and people were taking HIS book very seriously. When I got back to New York, I got one more endocrinologist and she was a winner. I was finally given a very thorough examination, a sonography-guided FNA, a diagnosis of benign/indeterminate and the suggestion that it was time to take the right thyroid (over 4 cm) out. We were in total agreement.
I visited an ENT surgeon who echoed the diagnosis, and sent me for a head and neck CT scan. This is where things got extremely complicated. I got a call from my surgeon a few days after the scan who informed me that I had a 3.6 cm meningioma (benign brain tumor) at the left occipital lobe, virtually on the same plane as my right thyroid nodule. That really threw a crimp in my day! Thyroid surgery was postponed as I collected a neurologist, an MRI, and a neurosurgeon, who explained that my tumor was big, it was in a bad place (wrapped around veins), and that I would be having a craniotomy, with follow-up gamma knife surgery because they couldn’t remove all of it. The meningioma was also a result of the radiation. However, all doctors were in agreement that I should proceed with the thyroid surgery, and I had it the beginning of February.
The first good thing was that you turned out NOT to be cancerous, so I didn’t have to have the other side out. The second good thing was that I could turn all the way to the right side, and sleep very comfortably for the first time in years because you were almost wrapped around my windpipe. I now face another MRI at the end of March. If the meningioma has grown, it comes out immediately. If it hasn’t, I have a year to decide when it comes out…so far I am asymptomatic, which adds to the weirdness of the whole situation. If it hadn’t been for David Small kicking my butt to get treatment for you, my dear thyroid nodule, I would have discovered the meningioma through headaches, seizures, field of vision loss, and ataxia. So the moral of this story is that if you’ve been irradiated as a baby, take it seriously. And I apologize to you my little butterfly-turned-goiter, I should have treated you a whole lot better.
(Bio) My name is Donna Ballard. I am a 59-year old librarian on Long Island, NY. I am married and have a 27-year old son, who is also a librarian (and so is my husband!). I was born in Phoenix in 1951 and have been married for 38 years. I have traveled extensively across America, and have been to Ireland four times, in conjunction with a digitizing project from my husband’s university.
Tags: benign thyroid tumors, Dear Thyroid Letters, hyperthyroidism, hypothyroidism, partial thyroidectomies, radiation exposure, thyroid disorders, thyroid nodules, thyroid tumors support, Thyroidectomies, thyroidectomy blog, thyroidectomy support