The next thing he ordered was a nuclear med scan. The test required that I come in to the nuclear medicine department at the hospital and ingest a pill containing 33.2 uCi of I-123 and then return the next day (1/18/00) to scan my neck. I remember this was a difficult time. It was now the 2nd week of January and I was nursing my son. Given that I was going to be ingesting a radioactive substance I was told that I would have to pump and dump for 3 days. So I stocked up milk for days before my test to prepare for feeding my son with breast milk from the freezer. I was determined that my child would not be fed formula and I would continue to nurse him when it was safe again.
The anxiety was heightening. My son was now almost 2 ½ mos old and I was set to return to work on February 2, 2000. The doctors continued to tell me it’s probably nothing over and over again. I tried to believe them but with a new baby it was hard to not worry. A decision had to be made about my work. I had a job that required travel and that was not conducive to the testing I needed. I decided to take a 60 day leave of absence from my job.
The nuclear med scan was inconclusive and it was at this point that my OB/GYN told me he was over his head and he needed to refer me to an Ear, Nose and Throat doctor. This was the wrong choice for this form of cancer. I should have been referred to an Endocrinologist. Since he believed it was probably nothing I don’t think much thought was given to future care or the appropriate doctor.
At the end of January 2000 I saw my Ear, Nose and Throat doctor. He evaluated my tests and we discussed that it would be a good idea to do a FNA (Fine Needle Aspiration) to determine what we may be dealing with. Again I was told that in most cases these nodules are benign and are “nothing”.
I arrived at the hospital on February 2, 2000 to undergo a fine needle biopsy (FNA). I was brought into a small examination like room with a table. I was placed face up on the table and given a pillow for under my neck to help stabilize it. I was asked if I would like to have it “numb” or not. Oh my yes!! I do not want to feel this at all. So they swabbed my neck with a surface anesthetic and then gave me a shot so that I would not feel it internally. I was instructed to lay very still as the Dr inserted a needle into the cysts and placed the fluid / cells that were drawn out onto slides for analysis. It wasn’t as bad as I expected. I did not feel anything and suffered no after effects.
On February 11, 2000 I returned to my ENT’s office for follow up to get the results of my FNA. The results of this test showed “focally atypical follicular cells”. He told me that these cells were abnormal but it still could not be determined if it was a malignancy. He again assured me that most of them are nothing and that we would take out ½ of my thyroid and it would be fine. If the other ½ of my thyroid did not pick up the slack for the half that was removed I would be given thyroid replacement hormone to take care of it. I was told it was easy and would just require taking a little pill for the rest of my life. My doctor advised me that the surgery might damage the laryngeal nerve resulting in a hoarse voice. This was somewhat upsetting to me. I was a member of an a ccapella He went over the incision, placement scarring and bleeding. “We” decided to schedule the surgery for a right lobectomy. I place the “we” in quotations because looking back on this there really was no coordinated effort. I was a tired new mom scared out of my mind as to what was happening and not understanding anything. I had no idea of the importance of my thyroid what it controlled or what options other than the one I was being hurried through were available. So onward I went …………blindly.
On March 1, 2000 I entered the hospital to have a right thyroid lobectomy. My mother came and took care of my son. My husband took me to the hospital. I had to stay over night. I remember pre-op. They had to start an IV. An older lady approached me and proceeded to try to start my IV. She made the first attempt on the inside of my left arm. She poked through the vein. Next she tried my right inner arm and poked through that vein. Then she went to my left hand and poked through that vein. As you can imagine I was beside myself at this point. I told her to go get someone who could get this done. I was a nervous wreck and in tears. Another nurse came and said a prayer and then proceeded to insert my IV. I remember her saying “Thank you Jesus”. I told her I agreed and it was at this point that she told me she had prayed for a positive result. She departed and returned a few minutes later with 3 latex gloves filled with ice. She placed them on each of my veins where the previous nurse had attempted to start the IV. I looked like a junky with huge bruises on my arms. Shortly before they took me to the operating room the doctor came in to talk to me. He wanted to make sure that I was ready. He marked my neck with a black marker to show the side of the thyroid he was to remove.
I remember being wheeled into the operating room. I laid on the table thinking about all the people that were praying for me. There were friends, family and church members from both my church and my parents and those of other churhes as well. It was very comforting. I remember praying myself that God would spare my life so that I could return to my husband and son. The next thing I remember is someone calling my name and feeling freezing cold. I was shaking and crying. They told me it was the anesthesia and piled warm blankets on my body. The doctor came in the room a while later and told me that he had removed 75% of my thyroid because when he got in it “looked bad”. I now question why no frozen section was done during surgery. I will never know at this point in my journey but this would prove to be an issue later when my pathology results were received.
I was wheeled into my room to rest for the night – although this is an oxymoron since in a hospital you do not get to rest with all the poking, prodding and blood pressure reading. In the morning my doctor and an intern entered my room. They had run some labs during the night. The tests indicated that my calcium levels were low so they suggested that I get some additional calcium. When I asked how I should do this I was told to take 5 or 6 TUMS per day. I was stunned! Did they not know that this was an antacid and taking this would reduce my stomach acid? Why try to fix one thing with something totally unrelated? This was to be the beginning of many more medical “treatments” I would question.
A few days after being released I began to feel tingling in my face. I called my ENT and was told that this was the calcium deficiency and was probably due to the parathyroid glands being traumatized by the thyroid surgery. I added more calcium that I had purchased from the health food store and that helped clear up my symptoms.