by Daria Jerauld, ThyCa Volunteer
In 1993, I went to the doctor with a terrible sore throat. “Has anyone ever told you that you have a generous thyroid?” asked the Doctor. My reply was simple: “Nope, what’s a thyroid?”
This conversation would start a three-year journey of ultrasounds, biopsies and medical appointments where I continuously heard the words “benign and stable” Boy, were those words wrong! The truth was “cancerous and growing.” In late 1995, after learning that a fluid-filled cyst I had developed could sometimes mask cancer, I decided to get a second opinion. After a painful biopsy and a dreaded phone call, I returned to the office to discuss what happened next.
At this point, things began to move very quickly at this point. It was early March 1996. Surgery was scheduled for March 19th, the Feast Day of St. Joseph (I’m Catholic). The surgeon’s first name was Joseph…a good omen. My surgery went well. In June of the same year, I was hospitalized for a round of radioactive iodine therapy (RAI). I was in an isolated room in the oncology ward, where everything besides my eyeglasses had to be left behind. This treatment included drinking radioactive iodine mixed with orange juice each day, like a radioactive screwdriver. I had colored pencils and I decorated my room with all sorts of funny signs. The one over my bed said, “Looking healthy with that radioactive glow.” The one on the leaded shield at the door, with a small lead glass window where my doctor visited me, said, “The Bat Shield.” My father urged me to put a sign on the window that said, “Send help.” I didn’t do that. I did have access to the TV and to a phone. Everything, and I mean everything, was covered in plastic—the mattress, the pillows, the TV controls, the phone—if I could touch it, it was covered. Other than the nurses taking my vitals or scanning me with a Geiger counter, I was left alone.
After a few days, I was allowed to go home but I had to be careful. In order to not expose my husband to radiation, I used the guest bedroom and bathroom. I flushed the toilet three times to move radioactive waste away from the living space in the house. I had to separate my laundry and let the radiation “decay” for a week before washing my clothes. I wore gloves when preparing food and I ate off paper plates and used plastic utensils for a week. I stayed away from other people, especially my friends of childbearing age. After learning that the cancer had spread to a nearby lymph node, I had another neck surgery a few months later.
In 2012, I switched my care to the Mayo Clinic because of parathyroid symptoms (muscle pain, joint pain, insomnia, depression, unquenchable thirst, etc.) Note that the parathyroid is NOT related to the thyroid, but sits nearby in the neck. Mayo discovered a small thyroid cancer recurrence which was thankfully treated with ethanol ablation. In January of 2016, my symptoms became unbearable and I had surgery to remove a diseased parathyroid. I needed a surgeon who specialized in repeat neck surgery. With two surgeries for the thyroid cancer, and scar tissue from the ethanol ablation, my neck was a bit of a challenge. The surgery was a success and I literally felt 10 years younger!
Each year, I make the pilgrimage to Mayo and I am N.E.D. (no evidence of disease). I have turned lemons into lemonade by giving back to others facing Thyroid Cancer. I am the volunteer for the southeast Kansas and Tulsa, Oklahoma area of ThyCa, an organization that provides support to those with thyroid cancer and for their families. We are not a group large enough to meet, so I offer support via phone and e-mail. Many questions are about the Low Iodine Diet. I have found a great resource and cookbook at ThyCa.org and I have a personal blog dedicated to the diet at thelowiodinediet.blogspot.com
I also work with other fantastic volunteers to co-lead and help monitor our Toll-Free Number. Anyone can call ThyCa any time at 877-588-7904 and leave a message. Our team of volunteers call back, usually within a day, and answer your questions to the best of our ability. We are not doctors, but we are schooled via the “school of hard knocks” and while we can’t give medical advice, we sure can share our own stories!
Remember to check your neck and report any findings to your doctor if you feel any changes. If you or someone you know needs help with Thyroid Cancer – feel free to reach out at ThyCa.org, call the Toll-Free Number, or reach out to me directly at firstname.lastname@example.org. More resources and support for thyroid and cancer-related topics can be found at supportgroupsinkansas.org/support-groups.