Recovery - Weird Voice

Not long after I was brought into the recovery room, the nurse that was assigned to me came in to tell me what our plan was: we were looking for three things: 1. Pain management – let’s keep it under control 2. Bathroom – let’s make sure I can go to the bathroom 3. Internal bleeding – let’s make sure my neck doesn’t swell up. She would come to my room every hour to measure my neck. 4. Nausea – let’s make sure I'm not feeling sick. Paul sat in a chair next to my bed – There was another patient bed next to mine but it was empty when they brought me into the room so it was just me and Paul for a bit. Then Claudia came in – she is Paul’s younger sister and she works at UCSF. It was kind of funny because when she came in, she told the nurse to give me morphine. I got scared because when I think about morphine I think about it as a drug that you give to people who are dying so I didn’t want that. Instead, I said that I would take a pill so they brought me a low dosage of Oxycontyn. They also gave me ice chips and those felt great in my throat – especially in combination with the ice pack that was on my neck. My throat was sore and my voice was tired and weak and I felt like I was a little congested so I asked for a throat lozenge. Dr Campbell (the second surgeon) said that it was normal since the breathing tube had those feelers on the outside. He said that there was trauma in my throat. Dr Campbell told me that during the surgery, my laryngeal nerve was damaged. He said that he could tell that my voice was weak and higher pitched than my pre-surgery voice. He said that my thyroid was very sticky and sick which was a result of Hashimotos. He also said that the calcified nodule was pressed right against the nerve and every time they tried to move the nodule, the nerve would move too. It was like they were fused together. Since the breathing tube was able to monitor the health of the nerve, they knew the exact moment that the nerve was injured. It took effort to talk and all that came out was a weird sounding whisper. The nurse brought some food but all I could eat was the honeydew melon. It was delicious and everything else was super gluten-full. I sent Paul & Claudia home because I wanted to nap. I didn’t sleep a whole lot because the lady in the bed next to mine (she came in about 45 minutes after I got into the room) and I started to chat. And it turned out that she knows my boss! She was really sweet and she had a drain after surgery because her thyroid nodule was so big. But her voice sounded like a normal strength voice so it did worry me that my voice was so very weak. The picture below is from the recovery room with the tape measure that made sure I wasn't bleeding internally. The small line under my incision is (I believe) what they used to mark and measure the neck. It is not a second incision.

Dr Jessica Gosnell

When I met Dr Gosnell, I liked her immediately. She is young, smart, she was wearing a Nike Fuel band and she is a thyroid specialist. She felt the calcified nodule immediately. She told me the risks of surgery: 1. Internal bleeding – she wants her patients to stay at least 6 hours after surgery to make sure that isn’t happening. If it is, they will know because your neck will swell up. And if it does happen, they need to get me back into the operating room to stop the bleeding. 2. Nicking the parathyroid glands can cause low calcium levels and prompt the need for taking higher doses of calcium. 3. Infection after surgery. 4. Stress or damage to the laryngeal nerve which is the size of dental floss and runs behind the thyroid. There is a 5% chance of damage to this nerve and if it is damaged, the voice will be compromised. This nerve also moves around as you breath, swallow, sneeze, eat, drink, etc. I liked her, I trusted her so surgery it was. Oh, and I asked her if she would be taking out both nodules and she let me know that she would be taking out the entire right side of my thyroid rather than just the nodules. She said that the nodules were like marbles in jello. You can’t just take the nodules out – you have to take the whole half of the thyroid out. And she also made it clear that she would not take out both sides of the thyroid unless she knew for sure that it was malignant while she was in surgery. They would do a quick pathology during surgery but the more comprehensive pathology test results would be complete over the next 7-10 days.

The Second and Third Hint

Second: During the ultrasound, the lady conducting the procedure said things like “oh that’s interesting” and “let me check the lymph nodes” which may have been part of the standard procedure but I wasn't expecting it so that gave me something to think about and when I left she looked me in the eye and told me in a sincere tone of voice “good luck”. That scared me. But the fear didn’t last very long. The Third Hint: Dr Woeber called to tell me that I have two nodules in my thyroid and he wanted to order a biopsy just to be sure that it was nothing to worry about. He said that it was probably nothing but that it is always good to be sure. The day of the biopsy I was told that I have two kinds of nodules: a calcified one that would be hard to biopsy because that would be like putting a needle into a marble and a squishy one which would not be hard to biopsy. I’m pretty sure they did not call it squishy but I forgot how they described it. They said that they would biopsy both but if they are not able to get into the calcified one, they would bail quickly but that won’t be a problem because it is very rare for a calcified nodule to be cancer. Sure enough, they had to bail on the calcified one and that was no concern to me. The biopsy was not painful but it was uncomfortable. Especially when they were trying to get that calcified one. I could feel the needle pushing that marble around and it did not feel good. I was glad when they called off that part.

The First Hint

I started to wonder if I should take thyroid medicine to help with my less than normal thyroid function so I thought I should find a thyroid specialist to answer that question. I was surprised to learn that it is not easy to get an appointment with an endocrinologist. I had to start by finding one that took my insurance and the ones that had been recommended were not on my insurance plan. But I found a wonderful man at UCSF, Dr Kenneth Woeber who is a Thyroid specialist and he agreed to see me once he looked over my blood test results. I wondered if I should have been worried when his office called me the day after I sent my blood tests to schedule an appointment and he was able to see me the very next day. That was the very first of a series of hints that I probably should have been worried. When I saw the charming Dr Woeber, he asked me in his South African accent “why are you here?” and I told him that I have Hashimotos and I wondered if I should be taking thyroid medicine to make sure my body got the benefit of a functioning thyroid and he said that before we answer that question, let me examine your thyroid to see if there is anything else going on. That surprised me since I had no expectation that there could be anything except for that annoying Hashimotos. I should explain that the end game of Hashimotos is Hypothyroidism which is what my mom has so I never thought that my thyroid problems extended beyond Hashimotos. I just thought that I caught my problem earlier than mom caught hers and that; hopefully, I would be able to manage mine before I ended up with the hypo problem. As Dr Woeber examined my thyroid, he mentioned that my thyroid was enlarged – about 1.5-2 times as big as a normal thyroid. I thought that was weird but I was not really worried. He asked me 4 times if it hurt when I swallowed. And he recommended that I get an ultrasound just to make sure everything was ok. He said that he didn’t feel anything but in hindsight and with more information, I am pretty sure that he did feel one of my two cancerous nodules. Of course he did not know that they were full of cancer but I am pretty sure that he felt one of them because one of them was calcified (hard like a marble). And the reason I believe that he felt it was because a few weeks later when I met with the surgeon she told me that she could feel one of them. Anyway, off to get an ultrasound and I was not worried - my feeling was more "well, that's curious". I figured that it was a good idea to check it out and that I was doing the ultrasound just because my thyroid was enlarged - not because there might be a problem in there.

How Did I Know There Was a Problem?

I have never had a weight problem. I have been a normal, healthy weight and size for all of my life until about 4 years ago when I started to gain weight steadily. Which might be normal for someone hitting middle age but to start putting on a significant amount of weight over 4 years and 2 of those were years that I was training for a marathon was odd. And for all 4 of those years, I was incredibly active with running, riding bikes and doing yoga. I averaged 4 on a slow week and 6 days of exercise on a good week. I used the Nike + app and a Nike Fuel band and both of them indicated that I was significantly above average in the amount of exercise that I did compared to the total user base and to women within my age group. It just didn’t make sense that I would gain that much weight in such a short period of time while I was so active. My regular doctor told me that since the blood tests indicated that my thyroid function seemed to be fine it was probably because I had recently gotten married and I was probably eating bigger portions. Part of me worried that it was just because I was getting older and my metabolism was slowing down but another part of me was worried that it was my thyroid because my mom has hypothyroidism and she went from being a small framed woman with an A cup to a lady with Double Ds. I was terrified that that was what was happening to me at a much younger age than it happened to my mom. One of my friends suggested that I make an appointment with a new doctor who might order a more extensive panel of blood tests beyond the standard ones so I made an appointment with Dr Teresa Black who is a MD who also practices acupuncture. Lucky for me, we talked for a long time about why I thought there might be a problem with my thyroid that was not showing up in the standard blood tests and she listened and then ordered a test for thyroglobulin antibodies and that finally gave me an explanation. I was diagnosed with Hashimotos Thyroiditis which is an autoimmune disease where your body produces antibodies to attack your thyroid and one of the symptoms is weight gain. I felt giddy with excitement to finally know that there really was something beyond my occasional ice cream treat to explain my weight gain. My thyrogloblulin antibodies were incredibly out of range but that didn’t seem to alarm my doctor a whole lot. In fact, thank goodness I asked for a copy of my blood test results because when my doctor went over them with me, she somehow missed the thyroglobulin antibodies results. I looked over them when I got home from my appointment and almost had a heart attack when I saw that mine were 2,503 when the normal range was less than 20. I immediately called and had to leave a voicemail because I had been the last appointment of the day and to make matters a little more stressful, the office was closed for another 2 days so I had 2 days of Google searches and worry until Dr Black called and apologized for missing that - we had two set of blood test results - an incomplete set which she was looking at when we spoke and a complete set which her assistant gave to me. Dr Black told me that I had Hashimotos and that it was super common and that one thing I can do to help reduce the symptoms is to go gluten free. There is something in gluten (is it a protein?) that looks a lot like something in the thyroid tissue and with Hashimotos, the body produces antibodies to attack the thyroid - when gluten in the body, even more is produced. The end game of Hashimotos is Hypothyroidism so it is very likely that my mom had it and just never knew it. That said, after a few months of being gluten free, I did not feel any different than when I was enjoying gluten. And my mom had recently gone gluten free and she felt a huge benefit – her years long gastrointestinal problems were much much better and she was able to lose weight which she had not been able to do ever since her body exploded with hypothyroidism. But I was making progress because I had a second blood test and my thyroglobulin antibodies had dropped to 2,300 which is still super-high considering that normal is less than 20 but it was also a bit lower than the original test. So I felt that I was making some progress and that it would just take a bit of time to feel better.

"We Need to Talk About Your Pathology"

8 days ago I heard some pretty shocking words that were followed by “it was cancer but it will not shorten your life span and it will not have a major impact on your life besides the need to go back into surgery to remove the rest of your thyroid.” So I got some pretty good news with the bad and I really did hear the good but it’s almost like the world stopped spinning and everything got silent except for the echo of the word cancer. It is such a heavy word and I associate it with death, misery, and the dismantling of a body. But my version is almost like cancer-light or cancer-ish. Sure, I have some bad stuff going on in my thyroid but it is very slow moving and with this kind of cancer (papillary), as long as you catch it early, it is very easy to get rid of it. And I knew that mine was caught early. Surgery and possibly a radioactive iodine pill afterwards and I’m done. Life will go back to normal.