Well here we go again it is that time for testing once again. I’ve been at this thing for over three years and it still gets hard not to worry about what will be found. They scanned my neck even more thoroughly than they have before, scanning the same area multiple times and with more than one tech. I have been a bit anxious this week waiting for the results as they have never scanned me like that before and maybe they were just being very thorough which is good. I would rather them be thorough than not scan me enough, as I have seen that happen to others where techs barely graze their neck and miss something that was there. I had my follow-up with Dr. Song and the results of the ultrasound show a slight increase in the nodule size and my lab work is showing that my tumor markers are up slightly as well. Although it’s not a big jump where we would actually have to do something about it; however, it is essential that we continuously monitor this. Moreover, my T4 levels are too high once again so now we’re back at the drawing board again, trying to get my levels right and having to adjust the dosage of my thyroid meds. Back in April my levels were just perfect and I thought after three years we finally achieved the perfect match with the right drug and correct dosage as I had never felt better. However, lately I’ve not been feeling that great and have had more fatigue again and now the high T4 explains why. I am surprised that this hasn’t yet pushed my heart back into overdrive again. I really don’t like the thought of having to add that tiny little pill back into my med regimen and hoping that never happens ever again! After this next adjustment, we’ll check my levels again in two months and hopefully I can get back on track; it will then be another recheck of my tumor markers along with another neck ultrasound in six more months. This game sure never gets any easier!
I was referred to the Huntsman Cancer Institute in Salt Lake City, Utah and saw a really excellent Head and Neck Oncology surgeon, Dr. Brandon G. Bentz on January 19, 2011. Dr. Bentz and his resident doctors had reviewed all my records and the scans that I brought with me; we discussed in length the varying possibilities but he did explain that since most of the masses seen were located on or near my thyroid that there was a great possibility that this could be thyroid cancer, especially with the calcified nodules. He recommended that biopsies be performed which will determine what exactly what we are dealing with and that more would be known once the biopsies were complete. He had also explained about the four various types of thyroid cancer: papillary, follicular, medullary and anaplastic. During the course of this visit I was also sent to the lab to get more vials of blood taken as it had been a few weeks since they had done that and I’m guessing to check for any changes or just for a comparison. From the receptionist to the nurses and the doc I felt that I was in really good hands.
After we moved overseas, I really didn’t pay too much attention to my health and really didn’t see doctors on a regular basis other than those annoying yearly pap smears. I guess you could say that I kind of fell through the cracks and didn’t have regular follow-ups like I should have. I really hated going to the doctors and I was just not educated on the importance of those follow ups and things to be watching for.
This journey really all started during the summer of 2010 with the many series of sinus infections I was having. This was not new to me, as I have had a lifetime of sinus troubles with multiple surgeries and was hoping that I was not headed for that again. However, I felt this swelling in my neck and it was felt by both me and my PCP doc. Being a DOD civilian we were able to utilize the military medical system for our medical needs, while being stationed in a foreign country. My doctor just about freaked out when he felt it and asked me how long the swelling in my neck had been there. I told him a few months and he was a bit upset with me for not coming back in to let him know about this. Nevertheless, we monitored it closely as he wasn’t sure if it was related to all of the recent sinus infections I had been having, but the swelling just never went away. So by the time December rolled around an ultrasound was ordered. I kind of put it off and waited until after the busy time with the holidays was over to schedule the ultrasound which was done on Jan 4, 2011.
I remembered that exam and was beginning to get real worried as they scanned, scanned and scanned some more. The ultrasound technician went over many different areas multiple times. She left the room and in walked the radiologist. He had a real look of concern and now I was even more petrified of what he was about to say. It was explained to me that I had multiple nodules which were calcified and the radiologist was recommending a biopsy. He said it could be a multi-nodular goiter, but with the calcifications that they were more concerning as cancerous nodules. I was worried about telling my family and so I kept it to myself until after my PCP doc called me back the next day. They now wanted to send me for a neck CT scan so they could get a clearer picture of what was going on. It was at this point I knew I needed to tell my husband. He went with me for the scan, which was done at Misawa City hospital on Jan 7, 2011 as the clinic on the military base does not have the necessary CT or MRI equipment and so they refer everyone out to the local Japanese hospitals for that kind of testing. At first I didn’t think it was necessary for my husband to accompany me to that exam, but glad that I changed my mind. I had to be transported by ambulance from the 35th Medical Group and escorted by another doctor as I had an IV in place. I remember that it was snowing really hard that day and my husband, Jerome, had to follow the ambulance in his car as he was not allowed in the ambulance with me while I was being transported to Misawa City hospital.
During the scan it was really strange when they injected the contrast into my IV as I never had that before and it felt as if I was going to wet my pants! After the scan, we went back to the clinic to wait for the radiologist at the clinic to read the films. It was not good news; however, the results were not exactly cut and dry and the nodules/masses were concerning for thyroid cancer as I had multiple calcified nodules all over my thyroid. The doctor said that we really need to obtain a biopsy in order to gain a better understanding of what we are dealing with. The military hospital is quite limited as to what they can do there. If they were to biopsy it there at Misawa, it would take several weeks to obtain results as they don’t have the necessary pathology required to do this and the tissue would have to be sent back to the U.S. The doctors were recommending that I be transported back to the United States for evaluation by a medical team at a major facility for biopsy.
The base commanders were attempting to get me shipped out on a military medical transport, but we later learned that us being a DOD civilian we would have to take the commercial route out. My doc asked where our home of record was and I told him in Utah and so he was searching for doctors in the area for me. He was able to get me in contact with a head and neck surgeon in Salt Lake City, Utah which was not too far from my parents’ home. Then, I phoned my parent’s to let them know of my situation and that I was coming home on emergency leave.
I only had a few days and then I was leaving Japan by myself without my family. I had to arrange for someone to take over the youth group and notify the schools that I was going on Emergency leave. I was really heartbroken to leave my teaching job and the students in my youth group as they have become like my own children. It was fortunate that my husband’s company was able to provide me transportation out of the country back to our home of record. Leaving without my family with me was very difficult, but I was able to stay with my parents so I didn’t feel totally alone. My family couldn’t go with me because of work and school obligations; our daughters were attending college in Japan and couldn’t break from their classes.