In the summer of 2008, I had coworkers ask what was wrong with my eye. Nothing, was my constant reply. It wasn't until then did I start actively paying attention to my eyes. Yep. The left one definitely was different than the right one. During an Optometrist visit, I mentioned this. He then promptly referred me to an Ophthalmologist. It took him looking at numerous pictures and two visits to decide my perceived eye problem was due to the way I was holding my head. Thankfully, he referred me to another Ophthalmologist.
The next Ophthalmologist took one look at me and said it looks like I have Horner's Syndrome. Horner's occurs when there is damage to a sympathetic nerve. This can be attributed to a car wreck, open heart surgery, lung cancer, etc. I had none of these, so I had my first MRI. A couple of days later I got the call that there was an enlarged lymph node chain and a spot on my thyroid. I was told I may have lymphoma.
After frantic calls to my primary doctor and the Ophthalmologist, I had an appointment with an Oncologist. The Oncologist ordered blood work, a PET scan, and MRI. I was relieved to hear that I didn't have lymphoma. He referred me to a Neurologist (still had no reason for the Horner's) and an Endocrinologist for the spot my thyroid.
The Neurologist ran several MRI's. There was still no reason for the Horner's. I then was referred to a Neurological Ophthalmologist (I think.). He advised that it was a sporadic case of Horner's. I was advised to keep an eye on it (heehee) and if it got worse (impede my sight) come back in.
The Endocrinologist advised me that most nodules are nothing. He left me with the decision to do nothing, have a biopsy, or take out my thyroid. I decided to have the biopsy.
January 9, 2009 I had the procedure. It was awful. The procedure requires them to take three samples. I was warned that a preliminary reading will be taken to make sure they got enough samples. If not, I had to repeat the procedure again. The shot to numb my throat did not work. Not only did I feel the pressure of the ultrasound on my neck, I felt the needle go in, extract, and go out. Between each sample I laughed. It was easier for me to control my laughter than tears. From the procedure I went back to work.
January 11, 2009 Sam and I went to Vegas to celebrate my 30th birthday. We had a fabulous time as always. After that trip, I went to Texarkana to celebrate Erin's 30th. In the back of my mind, I wondered about the results of my biopsy. I assumed no news is good news so I didn't press it until I came back home.
Two weeks had passed since my biopsy without word about the results. I called the Endocrinologist and was told to come in. If you know anything about hearing results over the phone, most (keeping reading) of the time they make you hear bad news in person. I rushed from work to the office. I couldn't get a hold of anyone to go with me. I went alone and heard the news that my biopsy was abnormal. In spite of hearing this, I tried to think rationally and logically. I looked to the Endocrinologist for answers and he was of no help. I was told basically it was up to me- do nothing or take it out.
I met with the Otolaryngologist and scheduled my surgery between semesters, February 18th, 2009. I remember waiting and waiting to be prepped. Family was there keeping me company while waiting and while being prepped. The Otolaryngologist told us that he would take out the enlarged lymph node chain and half of my thyroid. If it looked ify, he would take it all out. I requested that if he did, could someone please tell my family. He replied he would. In the middle of surgery, a nurse talked to my mom and Russ- they would take out all of my thyroid. When I was awakening from the anesthesia I had visits from the Anesthesiologist and Otolaryngologist. I thought I dreamt him telling me I had cancer.
My neck before surgery
My neck after surgery February 23, 2009 I was at home still waiting the results. Mom had just gone to the grocery store to pick up some supplies. No doubt she was getting some of my favorite things. She always has spoiled me. I don't know what led me to call, but I did. I was told over the phone I had Medullary Thyroid Cancer. An appointment was made to discuss everything and to figure out our next steps. I hung up the phone. Numb. Tears. No one to console me since I was home alone. I called Sam who at the time was coming back from Dallas. Kris answered the phone. I think I said- Pull over. I have cancer. Sam talked to me for a bit. He assured me everything will be okay. He would come straight to my house. We will figure out a game plan and he loves me. The next call was to Russ. People who work retail often have crazy schedules. Thankfully he picked up. I told him. After some comforting words, he told me to be strong when I told Mom. It seemed like it took her forever to get home. She was happy when she came home. I hated to tell her. I did and we both cried as we held on to each other. This whole day felt long and surreal. I did ordinary things- shower, eat, had visitors, but everything was different.
April 1, 2009 I had my second surgery to remove the rest of the lymph nodes in my neck and some in my upper chest. Medullary Thyroid Cancer (MTC) spreads to the lymph nodes and then to other parts of the body. MTC doesn't respond well to chemo or radiation, surgery is recommended. When talking about this surgery with the surgeon, he advised that he would use staples. I pleaded for him not to. He won. I remember looking at my neck for the first time. I cried. I looked like I belonged in a horror movie. I felt like I looked- awful. I was told that some other lymph nodes had enlarged since my first surgery, but like my first they were benign.
My neck before the second surgery
At the hospital enjoying the only thing I was allowed to eat after surgery
Staples
Removal of staples, still very swollen
Side view There is so much after this part of the story. It involves me fighting with the insurance company to get my genetic testing. MTC can be sporadic or hereditary. Thankfully, my case was sporadic. Unfortunately, to this day I am still fighting with the insurance company in paying this claim. I don't want to bore all of you with this.
Thanks to God, I am alive today. There are so many places in my story that I could have dropped the issue with my eye or my thyroid. Most of the symptoms I had with MTC were attributed to other medical issues I have. Theoretically, I could still have it in me. Maybe I would have found out soon, maybe later when it metastasized into other areas, or never at all.
These thoughts and others I won't share often come to my mind. I don't think they will ever leave. I struggle with being thankful. Sometimes I feel as though I am not thankful enough. With that being said....
Thank you. Chances are, if you are reading this, you helped me. I remember the visits, the flowers, the cards, the talks, those who helped me shower, those who braided my hair, those who brought me comfort food, those who held me, those who let me cry. To this day I have a wonderful support system. Thank you. Thank you. Thank you. My battle was won with your help. It is as much my victory as yours. I love you all.
midway up Scott's Head in Dominica, overlooking Caribbean Sea