One Year Out…

I am feeling very grateful as I sit down to write this post, which marks my one-year thyroid-versary. Last June, on a warm summer day, I awoke early with my hospital bag ready to go. I was heading to Weill Cornell Medical Center in New York, NY to have a total thyroidectomy with central neck dissection. I was diagnosed with thyroid cancer two months earlier, and filled the time before my operation with surgical consults, and good friends who tried as hard as they could to keep me positive and in good spirits (read the full story about my diagnosis here).

I wasn’t particularly nervous the morning of my surgery. After a lengthy trip, which felt longer than it probably was, from the east end of Long Island to the Upper West Side, I stood in front of the hospital not knowing what to expect, other than I would leave without my thyroid.

I was told to arrive early. My surgery was scheduled sometime in the morning. The hospital which I had been to many times before for consultations with my surgeon seemed still and cold on this day. Upon check-in I was instructed to have a seat in the waiting room and a nurse would get me ready for pre-op. The hospital was undergoing construction at the time, so sitting in the waiting room was not something I was looking forward to. I could feel my nerves elevating, as I listened to music on my iPod. Fortunately, my wait was short-lived and a nurse called me back with her. I didn’t realize then, but that marked the beginning of my hospital stay.

Trish, my nurse, was very friendly. She could sense that I was nervous and talked to me about the surgery and recovery. After getting me all set with a gown and my hospital ID band, she then set up my IV. Aside from coming dangerously close to passing out as she inserted the needle in my vein, I pulled through. Thankfully, Trish took pity on me looking back at her pale and ghostly, and let me stay in the private waiting room rather than have me go and sit in a crowded room near where the construction was taking place. I felt faint for a little while and tried to keep my anxiety at bay as best as I could. I made a few phone calls, flipped through a magazine, and just tried to relax.

By noon, after 4 hours of waiting, I became concerned about my scheduled surgery. Trish had been in and out of the room to check on me, but was uncertain what the hold-up was. Another 2 hours had passed and I was still waiting. By this time I was antsy and nothing I did helped to calm me down.

A doctor who worked with my surgeon came in to talk to me about participating in a study they were conducting. He asked permission to use my thyroid once it was removed and biopsied for medical research. At that point, I would have consented to anything just to get the show on the road!

By 4 p.m. we received the word that it was go-time. As nervous as I thought I had been waiting, it became suddenly real walking down the long, winding halls to the operating room. I should mention that this was the first surgery I have ever had and my first time in a hospital. Trying to enter the operating room was like being at customs in a foreign country. They asked me for everything except my passport! What is the reason for your surgery? What is the name of your surgery? Can you explain the procedure? I guess my answers were sufficient and I was permitted to enter.

It was the first time I had seen my surgeon since my last consultation with him. Dr. Fahey came highly recommended by a family friend and from the minute I met him, I knew I was in good hands. There was a team of doctors standing around him, and I’m sure they introduced themselves, but I can’t remember who any of them were.

Laying on the table was a strange experience. I saw faces looking down at me and doctors trying to make small talk when all I wanted to do was go to sleep. A mask was put over my nose and mouth that had a horrible plastic beach ball smell. Luckily, I didn’t have to endure the fumes for too long because I was out.

I have no idea how long my surgery actually took. I woke up in the recovery room around 7:30 p.m with the worst sore throat ever. I couldn’t talk, my throat burned, and I really wanted some water. I had compression boots on my legs to prevent blood clots – that was a strange sensation! After about an hour a nurse came and brought me some ice chips to soothe my throat. Since my surgery was postponed until the afternoon, my doctor had decided to keep me overnight for observation – which was fine because I really didn’t want to be in the car 2 hours to go home immediately after a thyroidectomy.

They brought me to my room around 9:30 p.m. Again, having never been in a hospital, let alone staying overnight, I really didn’t have high expectations. However, the room was gorgeous (if that is even possible in a hospital). I had a private room with a bathroom that overlooked the East River.

I tried to go to sleep, but I could not. Shortly after I settled into my room I met one of many night nurses. She was pleasant and told me that my surgeon had removed her parathyroid years earlier. She encouraged me to follow his instructions for my recovery and I would be fine. After checking my vitals she left and said she would return in a couple of hours. I turned the television on since there wasn’t much else to do. My neck was incredibly sore, and I needed both hands to lift my head to and from the pillow. The only thing that seemed to be on was Pawn Stars – which was mildly entertaining. I tried to make a few phone calls, but my throat wouldn’t let me speak.

A few hours later, the nurse returned. I was still awake and really wanted to get out of bed and walk around. I convinced her to take the IV out of my arm and to remove my compression boots. I promised to walk every hour to prevent blood clots. It felt good to stand up after laying down all day.

I continued to ice my neck overnight and be visited by nurses. Around 4 a.m, the phlebotomist came in to draw blood to check my parathyroid levels. There are four parathyroid glands located behind the thyroid, which during a thyroidectomy, can get damaged resulting in low calcium levels. At 5 a.m, a few medical residents came in to do rounds and see how I was faring after surgery – I felt like I was in an episode of Grey’s Anatomy. They changed the steri-strips on my neck and told me my surgeon would be in to check on me soon.

Before he began his next day of surgery, around 6 a.m., Dr. Fahey came in to assess my neck. He was surprised to find me changed out of my hospital gown and sitting by the window watching the sunrise. He told me my calcium levels were normal, but recommended that I take Tums for a couple of weeks just as a precaution. He said I could be discharged after breakfast and that I should call his office when I got home to make a post-operative appointment in about a week.

New York City Sunrise

The morning nurse came in to give me my first dose of Synthroid after my surgery. I was diagnosed with hypothyroidism weeks prior to finding out I had thyroid cancer, and my endocrinologist had started me on a Synthroid dose of 88 mcg. My surgeon warned me prior to surgery that once the thyroid was totally removed, the Synthroid dose would need to be increased until my thyroid levels were within a normal range. I was being started on 100 mcg of Synthroid daily.

After breakfast, not that eating was really an option, I was ready to go home. Before the discharge nurse even came in with the paperwork, I was dressed and ready to head out the door. I must admit, the hospital stay was not nearly as bad as I had imagined it would be until this point. It seemed like the discharge process took longer than getting admitted and the surgery combined! Thankfully, after a few failed attempts to get discharged with the necessary prescriptions, the discharge nurse finally emerged with the corrected paperwork and I was able to walk out of the hospital a cancer survivor.

It was so hot and muggy walking from the hospital to the car. I was exhausted after a sleepless night and my throat was still extremely sore. I was not looking forward to another long drive home, but at least at the end of it, I would be home. As predicted, it was uncomfortable being in the car and trying to hold my head up. Resting my head against the seat was no better.

Finally – I was home. I decided to spend the next few days after surgery resting, and although I explicitly said ‘no visitors,’ my pleas fell on deaf ears. I slept a lot during the day. I wasn’t able to eat solid foods yet, so I made smoothies and indulged in ice cream from Herrell’s (my favorite ice cream shop) and frappuccinos from Starbucks. Avoiding getting my neck wet with the steri-strips was a bit of a challenge. All I wanted to do after surgery was take a shower and wash my hair. To make matters worse, it was a hot June!

At home, six days after surgery – June 22, 2013

A week after my surgery, I returned to the hospital for my appointment with Dr. Fahey. I was nervous to meet with him as I would receive the results of the pathology report and I did not want to undergo radioactive iodine, the treatment after a thyroidectomy to destroy any remaining thyroid tissue in the body.

Dr. Fahey changed my steri-strips and said the incision was healing nicely. He told me that the pathology report confirmed I had papillary thyroid carcinoma, and although he originally thought the six lymph nodes he had removed were clean, one tested positive for cancer. I was devasted! I thought for sure the next words out of his mouth would be that I needed to have radioactive iodine as a follow-up. Fortunately, he gave me the option of a ‘wait-and-see’ approach, which put me at ease. We would monitor my anti-thyroidglobulin levels, one indicator of cancer, and as long as the numbers continued to decrease, we could hold off on further treatment.

I left his office elated and ready to move on with my life. I had spent almost four months consumed with my health and prognosis. I knew I would be seeing my surgeon and endocrinologist over the course of the next year, and years to come, but I was hopeful that I would have my health back and feel somewhat normal again.

I continued to have my Synthroid levels checked every four to six weeks and saw my endocrinologist sometime in July after my surgery. He seemed pleased with my progress. Over the course of the following year, I relied more heavily on my surgeon for my post-operative care, although it meant frequent trips to New York City. My last appointment with my surgeon was in March of 2014. Now that I am a year out after my surgery, he recommended that I see my endocrinologist for future care and gave me an appointment to see him again in June 2015.

I scheduled an appointment with my endocrinologist in April of 2014. It was my first appointment with him after the surgical follow-up last July. I was hesitant to see him as I remembered at the last appointment he wanted to increase my Synthroid dose. I had stayed on 100 mcg after my surgery and was reluctant to go on a higher dose as I was feeling okay. He reviewed the lab work I had in November and December of 2013, and again came to the same conclusion. My Synthroid dose should be increased to 112 mcg to keep my thyroid stimulating hormone (TSH) levels lower than normal and hopefully prevent the cancer from returning. After some initial resistance on my end, I finally gave in and accepted the script for the higher dose. I have been taking 112 mcg for about five weeks now and am preparing to have blood work done to check my levels. I am hopeful that this dose is appropriate and the levels look sufficient to the endocrinologist.

So, one year out, this is where I am. My scar has faded better than I had anticipated. It is now a faint line across my neck that serves as an important reminder for me to take care of myself. I realize now that this ordeal will never truly be over – I am not cured, but a survivor. I heard thyroid cancer best described as a “maintenance cancer”; I believe that is accurate. For the rest of my life I will have thyroid sonograms, blood work and periodic consultations with an endocrinologist. I have tried to get used to taking a Synthroid pill daily, and although we’ve experimented to find the optimal dose, I still don’t feel like my old self. At times, I am very tired and have little energy. This has been hard to accept, but it is the reality I am left with.

Overall, I am thankful. Prior, to my surgery, I had heard horror stories that paralyzed me with fear and made me want to take my chances with the cancer. I was fortunate to have very supportive friends that helped me accept my reality – and for that I am grateful. After my surgery, I found yoga, which helped to improve my mental and physical clarity. Through this journey, I recognized the importance of telling my story and finding my voice. I hope that anyone who has to go through a thyroid cancer diagnosis can take comfort knowing that you will find your strength through the process, and there are resources that can assist you. I found great support with ThyCa: Thyroid Cancer Survivors’ Association, and I would urge anyone needing advice or guidance along the way to consult their website (www.thyca.org).

Lastly, I am indebted to Dr. Porte, my gynecologist who found the thyroid nodule during a routine neck exam and my surgeon Dr. Fahey, who is an excellent and compassionate doctor. Additionally, a friend of mine whose brother-in-law is an endocrinologist also deserves praise. After weighing my options regarding removing the lymph nodes during surgery as a preventative measure, he strongly encouraged me to do so. I could not be more grateful for that advice, since one lymph node did test positive for cancer! And to my good friend Claudia, who took time out of her busy schedule to accompany me to quite a few appointments in New York City and who dealt with my somewhat irrational fear of public transportation – thank you!