No RAI!

The Tumor board met and recommended that I not do RAI. I didn't ask for their rationale, I trust the expertise of the medical team and I am so ready to move forward and get this behind me that I happily take their recommendation. Yay!

The Tumor Board

I've had follow up appointments with both the surgeon and the Endocrinologist. My incision is healing well and they decided to present my case to the tumor board to figure out whether or not I should do the Radioactive Iodine treatment. The surgeon thinks I might be a good candidate for it but the Endocrinologist thinks that it may not be necessary at this time so they want to get together with a cross functional team of doctors (Endocrinologist, Surgeon, Pathology, etc) to review my case. I like that they are doing this and I will follow whatever recommendation they come back with. Outside of that, things are going well. The higher dose of thyroid medicine seems to be about right because I feel fine. I went for a run today for the first time in quite some time. It was hard and I can feel my extra weight pounding on my bones but in time, I hope that extra weight finally goes away and the running gets easier because it was not easy. My basic run has been 6 miles for so long that it was interesting and humbling to have a hard time making it around the track one time (about 1/4 of a mile). I walked and ran and walked and ran then did a few shorter sprints. I took it easy and didn't do too much. I really hope that my body starts reacting to exercise and diet as it should. It hasn't been functioning normally for a few years so now I really expect things to improve with hard work which I am committed to doing. We shall see.

No Laryngeal Nerve Damage from my last surgery!

I arrived at the hospital at 7am and I was brought to my room to get started. First, change into the gown, then the no-slip socks and then get into the bed and answer questions like: when did you last eat? What was the last thing you drank? Are you in any pain, etc. Then the anesthesia Doctor came in and I told her that I was nauseous in the car when I went home the last time so she told me about the anti-nausea stuff they were going to put in my anesthesia cocktail and she gave me a patch to put behind the ear to help address longer term nausea. The surgical resident and an intern came by to introduce themselves and the nurse who would be with me in surgery came by to do a few thing (get few more signatures, etc.) I put on the blue shower cap thing, said bye to Paul and they started to roll me down the hallway to the operating room. The next thing I knew I was in the Operating room and then I do not remember much after seeing those big surgical lights and all of those people standing around. Some were putting sticky things on my skin so they can monitor important things like heartbeat and who knows what else. For this surgery, one of the most important monitoring tools is a specialized breathing tube that has sensors that monitors the my Laryngeal nerve. The machine makes all kinds of noises it if recognizes a change in the nerve function. I was in the operating room for 3 hours and when I woke up, my neck was cramping so they gave me something to make it stop. I sort of remember waking up from surgery and asking if my voice was normal and I think I asked a few different people. Thank goodness there was no damage at all to the nerve on this side! For this second surgery, my incision was stitched and taped rather than glued shut. I had the recovery room to myself and the nurse lowered the shades so it was dark and cozy. I had cantaloupe, honeydew and pineapple for lunch. Paul spent some time with me after surgery but he left for a few hours so that I could get some sleep. And I did sleep but a few times I woke up because I was super nauseous and I did actually get sick in the bathroom. It was pretty terrible. Despite my nausea, I still wanted to go home that day but I couldn't leave until they tested my calcium levels. They were a little low so I was given a prescription for Tums. Which is pretty inexpensive so it's good to know that is a good way to get calcium. By 8:15PM we left the hospital and headed home sweet home. We were against the clock trying to make it to the pharmacy before they closed at 9pm but traffic was no problem and we made it to the pharmacy at 8:45. When we got home, I started to walk up the stairs to our house and as soon as I got to the top of the stairs, I turned around because I knew I couldn't make it to the bathroom in time to get sick again. I threw up 4 more times outside of the house. It was dark and I really hope the neighbors did not hear or see me. I am so relived that my voice is normal. I feel more tenderness compared to the last surgery but maybe I didn't pay attention to the pain because I was so concerned about my voice. So now I am at home and my dog is by my side and my parents are here too. I meet with the Endocrinologist next week. I want to know if he agrees with the surgeon that I should do the Radioactive Iodine treatment. If he says yes, I will find out how soon I can get that done.

Tomorrow - Surgery #2

In 12 hours I will be in surgery to remove the rest of my thyroid. I feel a mixture of anxiety and also excitement. Not that I am super excited to have surgery but I am super excited that this phase is almost behind me. I have a feeling that my laryngeal nerve will make it through unscathed this time around but if it is damaged, I know that it will get better. I wish I could figure out a way to load my voice recordings to make this a complete record of this experience but I don't know how to do it. My surgeon told me that I am a good candidate for the RAI/Radioactive Iodine treatment so when I see my Endocrinologist next week, I will find out what he thinks. If he says that I should do it, I want to get it done as soon as possible. My surgeon also told me that UCSF tests Papillary Thyroid Carcinoma for the BRAF V600E Mutation and I tested positive for this. She said that they have been testing people with this kind of cancer for that gene and that the majority of people (approximately 80%) test positive for the gene and that they are trying to figure out what this means and how they can act on this information. Another thing she said was that in Japan, they are doing a study with people who have this kind of cancer and rather than operating, they are just watching the patients to see what happens. She said that the medical community is very interested in seeing what they learn. One final piece of information that I found very interesting is a Q&A about Thyroid Cancer in the New York Times from an Endocrinologist from Sloan Kettering. For some reason, I can't insert a link to the Q&A but I recommend googling: Ask an Expert About Thyroid Cancer with Dr. R. Michael Tuttle, an endocrinologist at Memorial Sloan-Kettering Cancer Center. It was published in October 2010. OK, it's time for a bath and then off to sleep. Or to try to sleep.

Surgery #2 is on the calendar

I have a date for my next surgery and it is in about 2 1/2 weeks which is great because that means that I can get this over & done. And I know that if I have damage to my laryngeal nerve, it will get better and my voice will get back to normal like it is now. I have a pre-operative phone consultation with the nurse next week and a pre-operative in-person appointment with the surgeon also next week and then it is off to surgery from there. I already have a post-op appointment with the surgeon and I have requested an appointment with my Endocrinologist after the surgery so we can see how much we will need to bump up my thyroid medicine dosage. And I placed an order for a new beautiful scarf as a treat for surgery #2. I should also mention how great my husband has been through all of this. He has been really strong and kind and gentle and thoughtful. I could describe him that way on a normal day but through this, he has been exceptional - I feel loved and that I am really cared for. And if that isn't wonderful enough, after the first surgery he went out and bought me two beautiful Burberry scarves which are in the picture here. He did not even know at the time that I would be needing a second surgery - he just wanted me to have one for a warm day and another for a cool day. I will definitely be using them both a lot in the upcoming months. Lucky that I work in San Francisco because July is usually quite windy and cool so it won't be weird to be walking around with a scarf in the summer in this town. I'll post again in a few weeks after the next surgery.

Normal Vocal Cord Function!

My Vocal Chord Function was tested this morning and the Doctor said that my function was completely normal. Here is a quick recap of why it was necessary. In my surgery to remove part of my thyroid, my Laryngeal nerve was stretched so one of my two vocal cords was not working properly. Here is an image I found that shows what your cords are supposed to do when they work normally: Pretty simple, right? They separate when you breathe and they open and close and vibrate and do all sorts of things when you talk. There are two nerves that run behind the thyroid that make the vocal cord work. One of the nerves is under the thyroid on the right side and the other is under the thyroid on the left. My surgery was to remove only the right side of my thyroid and when that nerve was stretched in surgery, the result was that the vocal cord on the right side did not move. It just stayed in the closed position. Since the nerve on the left was not damaged, that side worked fine. My voice sounded pretty strange (very weak) and my breathing was very shallow but at least I could talk and breathe. It took about 5 or 6 weeks for my nerve to heal on its own. The doctor told me that there is nothing that you can do to hurry up the healing process and I asked if my bike ride (when I felt like I was having an asthma attack) made my recovery slower, he said no. Anyway, the procedure to check the function was really interesting though I almost passed out when I saw the tool that he was going to use to test the function. This instrument of terror is called a 70 degree rigid endoscope. Before the procedure, the nice Dr Fink asked if I was in any pain and I told him no asked if that was about to change. He said no but I wasn't sure that I believed him so I asked "what are we about to do and what are you going to do with that thing?" He said that he would examine my ears which have no connection to the vocal cord but that is part of their basic exam since they are part of the Ear, Nose, Throat group at UCSF. Then he used the popsicle stick to make me say "ahhhh" and then he recorded me reading a few pre-written sentences. Now they will have a record of my voice when it is healthy. Before we did that, I let him listen to the recording I made of my voice a few days after surgery. Now it was time for that scary tool. The Doctor was really nice and he put me at ease pretty quickly when he said that he would insert the tool into my mouth until he reached where my back teeth are and the tool has a high resolution camera in the tip which is angled at 70 degrees and would let him see my vocal cords. He said he was going to have me say the letter "e" a few different ways and he would film the cords doing their "e" thing and then we would be done. That didn't sound terrible and it wasn't. Before he put that thing in my mouth, he dipped the tip into a cup of hot water and quickly told me that the instrument of terror was sterilized and that the hot water had nothing to do with cleaning it but rather, they warm it up so that the camera does not fog when it is put in your mouth. His gloved hands picked up a piece of gauze and he used that to hold my tongue and stuck that thing in my mouth and started telling me how he wanted me to pronounce my "eees": regular, high pitched, low pitched, high to low, low to high, high low high low, fast, slow and that was about it. It lasted no more than a minute, probably more like 40 seconds. He told me that some people have a very strong gag reflex so for those who can't handle having that thing in their mouth, they have to take a little camera and stick it down their nose for the test. Thank goodness I could do this one. The Doctor let me see the video of my cords in action and I will say it was really cool to see. He said that the function was completely normal so that means that I can schedule my next surgery to have the rest of my cancerous thyroid removed. Yay! On a related note, my Mom has a friend who had a total thyroidectomy and she suffered damage to both of her laryngeal nerves during the surgery and that was a pretty terrible outcome - it has been a few years and she is still not 100% back to where she was before the surgery. My humble advice is that if you have to have this surgery, make sure your surgeon is a thyroid specialist and does hundreds of these surgeries each year. My surgeon fits that criteria and I still had damage to mine. I also recognize how important the breathing tube is for this surgery. The one that they used for my surgery had feelers/sensors on the outside which constantly monitor the laryngeal nerve function throughout surgery. The second mine was damaged they doctors knew it had happened and if I had been in there for a total thyroidectomy instead of a partial, they would have stopped the surgery after they had finished removing the thyroid tissue from the damaged side. They would not have continued with the total. I think about Mom's friend who had this surgery a few years ago and I assume that this specialized breathing tube was probably not invented yet or maybe it was not in widespread use because had they had one, the minute they knew that one side of her nerve was damaged, they could have finished removing the thyroid on the damaged side and stopped the surgery. She could have recovered from the damage and then go back in for round 2 when everything was better. Of course I do not know the circumstances for her - maybe they HAD to remove both sides immediately no matter what and maybe rather than just stretching her nerve they actually cut it and it would not have healed so there are certainly many things that I don't know about this but what I will say is: 1. Make sure your surgeon is a thyroid surgery specialist who performs 100+ of these surgeries each year (I got this number from thyca.org) 2. Make sure your surgeon will use the breathing tube that monitors laryngeal nerve changes during the surgery. I hope this helps!

Tips for hiding the Scar

After surgery, I wanted to hide my scar so I brought our a bunch of scarves that I had but I also wanted to have a variety so I went shopping. First of all, I treated myself to a pretty scarf that was unique because it is not very wide (approximately 2 inches wide). Not only was it a treat but it was also quite a splurge - I wouldn't normally buy such an expensive scarf but I figured that I would be wearing it very often. Here is a picture of it from the brand's website. I also went shopping to find other options and I came across a bunch of super inexpensive ones as well. I bought a bunch of fabric hair bands from Forever 21 which were around $3 each and I just cut them and tied them around my neck so they could fit snugly. Here is what those look like. And here is a picture of one of the headbands turned into a scar-hider: To recap, #1 splurge on a beautiful scarf #2 get a bunch of cheap ones too so you have lots of variety

Friday is a Big day: Voice & Swallowing Center appointment

I am going to the Voice & Swallowing Center at UCSF on Friday to test my laryngeal nerve function. Since it was damaged in surgery, I can not have the follow-up surgery to remove the rest of my thyroid until it is completely healed. I am quite sure that I will pass with flying colors because my voice is completely normal now but I do think that swallowing feels different since I have had the surgery. I don't know if that is really true or if I am just ultrasensitive. I will ask the experts on Friday. Also, I hear that the test will include sticking something down my throat and making me talk. I've also heard that it is not very pleasant but I will provide an update once it is done. I want to hurry up and schedule my next surgery for two reasons. One, I would like to not have cancer in my body anymore and two, my health insurance plan year ends at the end of June and I have already hit my out of pocket maximum. Wish me luck!

Laryngeal nerve damage

I haven't said much about laryngeal nerve damage so I'll focus on that now. I have recordings of my voice after surgery but I couldn't figure out how to post it on Blogger so I'm sorry to say that you won't get the multimedia experience. My voice sounded like it was hard to get a whisper out (it was). Thankfully, about 5 weeks after surgery, my voice is completely back to normal. If this happens to you, I would recommend resting your voice as much as possible. Try not do anything that will get you out of breath because your breathing is also affected. Don't strain yourself either, I should not have gone on a mountain bike ride two weeks after surgery because I felt like I was having an asthma attack. My breathing (very shallow) seemed to be worse after that and I think my voice got a little worse too. About a month after surgery, I had body work and my friend (a therapeutic massage therapist) focused on my diaphragm which she could tell was very tight on the right side (the side that the nerve was damaged). After she worked on me, It seemed like by breathing and voice started to get better. Body work focuses on muscles and my problem was a damaged nerve but maybe the muscles near or around the nerve started to let go after she worked on me. Also, my husband went on a work trip so I didn't talk as much at the end of a day when my voice was tired so.. 1. Time - it takes more time than you would want for it to get better. 2. Strenuous Exercise - no! - Don't do anything that will make you breath very hard 3. Rest - seriously, do rest the voice 4. Have someone work on your diaphragm - I laid down on the ground and my friend put her hands on my diaphram and had me take deep breaths in and out while she had her weight on me. I really do think that it made a difference for the better. 5. I believed that my damage was permanent so I was very scared but it was not. Trust that it will probably get better.

The Good News

My Hashimotos symptoms should be much better once my entire thyroid is removed. I asked, “even if I am taking thyroid meds?” and found out that the antibodies are attacking the thyroid tissue, not the hormones. So when my thyroid is totally gone, those symptoms should go away. That is such great news. I didn’t ask if I could eat cake again but I am pretty sure the answer is yes. In fact, since I found out that I’ll be taking out the rest of my thyroid, I have ordered pizza twice and I had a chocolate chip cookie – all gluten-full. I figure, my thyroid is already super sick and sticky so what’s another few slices of pizza and a delicious cookie? It will all be gone within the next 2 months. Will I be able to enjoy Dipsea pancakes again??

We Need to Talk About Your Pathology Part 2

2 weeks after surgery, I had an appointment with the surgeons and I had a huge list of questions about when my voice would be better and a few questions about when I could start running or riding my bike again. Which brings us to the “we need to talk about your pathology” that Dr Campbell said. I could not believe that I had cancer. I never thought for one moment that I would have it. Of course I knew that the reason we had surgery was because that was a danger but I really did not think that I would have it. I just thought that we were taking it out before it turned into cancer. Dr Gosnell and Dr Campbell asked if I had any questions and I had already asked all of my prepared questions which were about my voice and working out. I had not prepared any questions about cancer so I finally asked “uh, what’s it called?” Papillary Cancer, I learned. And, “uh, is there some place that I can read up on Papillary Cancer?” Thyca.org, I learned. And then there was the practical: we won’t do the next phase of surgery to remove the left side of your thyroid until your laryngeal nerve is healed. And we will test your thyroid function in a few weeks to figure out if you need to be on low-level thyroid medicine between surgeries. I will have that nerve tested in about a month and then have the next surgery approximately 2 months after the first assuming the nerve is better by then. After the second surgery, I will have to take thyroid medicine for the rest of my life and while it can take some time to get the dosage right, I figure that it will be great to finally have a functioning thyroid even if it comes from a pill and not actually a functioning thyroid. My appointment with Dr Gosnell & Dr Campbell started about an hour late and I was with them for about an hour so Paul called several times when I was in there. When I got out, I didn’t want to call him right away because I was kind of scared and didn’t want to scare him. I didn’t want to tell him on the phone but he called me when I was driving and asked what they said and I told him that I could run/bike whenever I felt like it and then he asked, what did they say about the pathology? So I had to tell him along with the “my life won’t be cut short because of this”. He told me that he loved me and that we would go through this together. I was glad that he knew. I didn’t want to call my mom because I knew she would worry but I decided to call her anyway because I wanted to talk to her and she had a really good reaction. She was calm and said that we would just get through it. And so began the calls.

Home Sweet Home

When Dr Gosnell came by to see how I was doing, I told her that my pain was in control, I had gone to the bathroom and that I wasn’t nauseous so she said that I could go home if I wanted to. I asked what she recommended and she said it was really up to me and that I might get a better night of sleep at home since the nurses would be checking on me all night. So I decided to go home. I was checked out and Paul & I were in the car heading home by 5pm. And by 5:01pm, I was feeling incredibly nauseous. To get to my house from Mt Zion hospital, you have to go up and over the hills of Divisadero towards the Golden Gate Bridge and I was miserable but thankfully I made it home without getting sick. Paul & I set up the second bedroom as my sick room with a bunch of pillows so I could sleep with my head elevated, ice pack on my neck and pain killers at my side. The nurse let me take the paper tape measure home so Paul measured my neck every hour until I went to sleep. I took pain meds but not very many. Uli (the dog) was acting a little odd the night I came home from surgery and the following day. He slept at my feet so he was close but not super cuddly. By the third day after surgery he became mister super loving cuddlebunny and he could not get any closer to me. I thought that was odd but then I realized that maybe he was aware that I was a little weak after surgery and then as I was feeling stronger, he knew that he could be cuddly. My neck was stiff and I was feeling weak but that only lasted 2 or 3 days. My voice was the longer-term problem but my body recovered pretty quickly. I didn’t realize that my breathing was compromised until I tried a bike ride 2 weeks later.

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.

After Surgery - the Best and the Worse Part of it all

The procedure took just under 3 hours and I remember waking up feeling super groggy. Immediately there was a nurse above me asking if I was in any pain and I told her that it felt like my neck was cramping so they put something in my IV and that pain went away. I was groggy pretty soon after that and then eventually started becoming more alert. The staff was very tuned into me and when I was able to keep my eyes open for a pretty reasonable amount of time, they decided that I could go to my recovery room. I was probably in the post-op room for 30-45 minutes before they moved me to the room. The best part of leaving post-op was as soon as they brought me out of the room, I saw Paul standing there. We went to the elevator and Paul disappeared for a few seconds when they got me in the elevator then they let him in and he made his way next to me and held my hand. I felt so safe and happy to have him there. The worse part of it all Paul just lost his father and he spent my time in the operating room writing his dad’s obituary. It’s hard to not feel guilty for putting him through this when he is dealing with the loss of his father after years of dementia and diminishing health.

Surgery

I have never had surgery before but I did as told and didn’t eat or drink anything from midnight until my 6am check-in time. I woke up at 4:45 and took my Uli out for a walk and then took a shower. It was so peaceful to be outside with my babydog at that time. Then Paul drove me to the hospital and I went into the “check-in” room on my own while Paul waited in the waiting room for me but after a few minutes, I asked if I could bring him in and the nice lady checking me in said of course. So I asked Paul to come in and I felt a tiny bit less scared having him there. By 6:45, I was brought into a room and given a gown. That is when I started to get nervous. Once I was in my gown, the nurse came back in the room and I asked her if I could leave my underwear on and she told me “no, everything off” so I had to go back in the bathroom to take them off. I felt weird about that but later on when I had an IV in my arm and had to go to the bathroom, I realized what a good idea it was. I also appreciated the “open in the back” hospital gown for that same reason. Anyway, it was a very fast paced process after that. A nurse came in to put the IV in my arm, I was given a warming blanket and when I asked for a second one, they quickly brought one, a lady that is conducting a research test that I agreed to came in to say hi (I knew I would give blood before the surgery for the research), the anesthesiology team came in to talk about the procedure and to ask me if I had any loose teeth that they should know about. I told them that I didn’t but that if I came out of surgery with one, I would know who was responsible – we giggled about that (mine was a nervous giggle). Here I am before things started really moving forward in the pre-operative room. They put an oxygen strip into my nose at some point and then the surgeons came in to see how I was doing and to ask if I had any questions. Paul had my long list of questions and so he asked some and then commented that I had a lot of questions and that some are probably better to ask after surgery. I laughed because I was hoping he would ask my question about how hard the thyroid is to remove – my example that he did not read referred to chicken – some bits are super easy to cut apart – just snip a little part and you’re done and then other parts are harder to separate. What part of the chicken is most similar to the thyroid? Paul looked amused as he read that question to himself and skipped to the next one. The surgeons told me that the breathing tube that they would use for this surgery would have “feelers or sensors” on the outside so that they could monitor my laryngeal nerve throughout the surgery. I had been told earlier that before they took me into the operating room they would inject something into the IV that would relax me. Thank goodness because things were happening so quickly that by the time I was ready to go into the operating room, I needed to be relaxed. My normally very low blood pressure was elevated pre-surgery. I was able to look up and see Paul’s face while all of those people were coming into the room. After I was relaxed, (I think it took all of 30 seconds to be effective) the team moved me from my hospital bed to a stretcher and into the operating room. I remember being moved from the stretcher onto the operating table and seeing two or three giant light sources above the table. I remember saying that the lights were like I remember from TV shows like ER and the staff laughing. I was told that they were going to put sticky monitors on my body and they did. Then it was time to tell me that they were going to put an oxygen mask on my face and that I would fall asleep pretty quickly. I think I was out within 5 seconds. Maybe less.

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 Fourth Super Obvious Hint that was not really a Hint after all – it was a loud and clear alarm bell.

On a Friday - two days after the biopsy, I got a call from the pathology department at UCSF telling me that I needed to go back in for a follow-up biopsy and they open at 9am on Monday, can I come then. I said “uh, sure, ok” and then immediately called Dr Woeber who was gone for the day. Then Pathology called me back and cancelled the Monday Biopsy and said that maybe I don’t need another biopsy. I begged Dr Woeber’s assistant to ask that he please call me at home over the weekend and thankfully (and kindly), he did. He told me that my pathology results were suspicious and that I have three options – I could do nothing now and just keep an eye on it and do more biopsies in the future. Two, I could be proactive and have surgery to remove the nodules. Three, I could do another biopsy where the tissue would be submitted to a genetic test which is new, it has a 90% accuracy rate but because it is so new, many insurance companies will not pay for the test. He also said that the “suspicious” findings of my biopsy had a low risk of being malignant – only a 5-10% chance. I didn’t want to sign up for a future of biopsies, I didn’t like the math of taking a test that had a 90% accuracy rate with a suspicion that had up to a 10% chance of being malignant so I chose surgery.

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.