My Experience With Thyroid Cancer

I had the radioactive treatment on July 13. I had a small preliminary dosage two days prior, and then I had multiple scans the day of the dosage. Because I'd had the small dosage first, the medicine lit up on the scans and told the doctors where the thyroid cancer was in my body. The radioactive iodine is attracted to thyroid tissue, so whatever lit up for them told them if there was a ton of cancer, or just a little bit. The plan was to give me 100 millicuries of radioactive iodine. (I googled the word millicurie and it's a unit of measurement specific to radioactive material. Hmm). The radiologist had said that if it's lighting up in my lungs or bones, I'd need to have more. This was a scary, anxious time. I was waiting to learn if the cancer had spread to my lungs or bones. My head went over and over about it and I pictured all different scenarios. I felt like I had no control in my life whatsoever. It's sad thinking about it now. Sidebar: remember what I said ...

I had to observe a low iodine diet before the radioactive iodine dosage, and I had to continue it for a few days after the treatment. So I was on the diet July 5-16. It was really hard and I didn't enjoy it. But I survived it! That's the message I can share. I can't tell you how to love the diet, but I got through it. My mom did the diet with me, and I really respect her for that. Here is a list of things you can't eat on a low iodine diet: salt, sea salt, dairy items, soy items, chocolate, any commercially baked goods like bread, cookies or anything like that. Also no carrageenan, no dried fruit because of the sulfuric acid, egg yolks, and definitely no seafood allowed. Also nothing with red dye #3, which means no maraschino cherries. Basically since no salt is allowed, that meant no fast food or processed food. You would be surprised how many thing have salt that really shouldn't. Here's what can be eaten on the diet: 6-7 oz. of meat per day, four servin...

After surgery but before the radioactive iodine treatment, my life had a slice of normalcy. I started back at work, and I have to say I was blessed with a great job and my boss never made me feel bad for all the time I took off and all the uncertainty there has been. I met with a radiologist for the first time sometime around June 26. My endocrinologist had originally told me that I'd only have to go off my thyroid medication for five days before the RAI, and that seemed doable. I was pretty bummed to learn that that wouldn't be the case for me. Dr. Ng told me that day to stop taking my medication. The target date for the RAI was July 13. He explained that my TSH (thyroid stimulating hormone) needed to be around 35 for me to be fit to receive the treatment. Let me take a minute to explain those numbers. Someone with a perfectly functioning thyroid has a TSH of 0.5 - 5. If someone has a low thyroid, that number goes up. You would think it would go down, but low thyroid actua...

My total thyroidectomy surgery was June 1 at Kaiser Roseville. I was somewhat nervous, but I didn't go nuts. The big lump on my neck was really bothering me, so I was so anxious to be rid of it. I got to the hospital, put on the gown and went through the whole process. Finally the time came to say goodbye to my mom, dad and my boyfriend. They wheeled me away to the OR. I get in there and it's really cold. I see on the whiteboard "Mary Cullen," and I had to tell the nurse that's not my name. Like really, was that an omen?! I had to tell him that Mary is my middle name, Caitlin is my first name. And then I fell asleep. Finally! I woke up asking for pain medication. That's what I remember at first; those were my first conscious thoughts. Then I saw my family. That was nice, and such a relief. I had a private room, and later I was told that I was on the oncology ward of the hospital. That was certainly a lot to think about. Like wow, this is real. Fortunately, I...

Hello there! It's been a while, eh? I feel like I've been so descriptive in writing these blogs, which is great, but then writing the next piece of my story becomes daunting. Here it is late September, and I haven't gotten the blog current with my June surgery. I want to be caught up so I can post current stuff :) So that is my goal!

After the second diagnosis, my parents and I had a meeting with my endocrinologist and the head of sub-specialty medicine at Kaiser. They didn't apologize as much as I'd have liked them to for the mistake that was made in my misdiagnosis, but whatever. Dr. Chan explained that her gut instinct had been that it was cancer. She explained the various indicators she had seen. So I still trusted her judgment. My Mom was very concerned and brought up that perhaps I should have a new biopsy. Of course it makes sense--the results of the first biopsy had been misread and mishandled and it felt tainted. But I felt so fragile and bummed out about everything and I didn't want to have another biopsy, so we moved on. My Mom took me to the Cheesecake Factory, my favorite restaurant, after that meeting. The pain of this journey has been softened by doing fun things like eating at my favorite restaurant or just doing fun things. I had a lot of fun things to do in May, actually. I saw Modes...

On May 2, my endocrinologist called and told me that I did in fact have cancer. My first instinct with this is to end the blog post there...but how could I be such an open book about everything else and then be private with this? I look back on that day and things were already put in place that I didn't foresee. I didn't really feel like being at work that day and when my eye started hurting for some reason, I decided to ask to leave early. That's not normal for me, so I was allowed to go home. I was sitting on the couch when a strange 916 number called. I answered because I assumed it was someone at Kaiser. Somehow I've never put a single Kaiser phone number in my phone. It was Dr. Chan. She asked where I was and I said I was at home. (I would ordinarily be at work, though. This was around 4pm). I think if I said I were at work or if I were driving, she would have asked me to call her back, but I was just at home. She didn't beat around the bush. She jumped r...

The next step was to be referred to a surgeon. I worried about that. Dr. Chan said that she had a few surgeons in mind that she hoped I would be I guess "matched up" with. I got a call from Head & Neck Surgery at Kaiser Roseville. Clearly they were not trying to be sensitive when they named this department. The receptionist set an appointment for me with Dr. Doctor. Before I could say anything, she said, "Yes, his last name is Doctor." The first chance I got, I went to Dr. Doctor's page on the Kaiser website and I tried to learn all I could about it. Based on where he went to school and his service in the air force as a head & neck surgeon in Afghanistan, I felt confident that he would do a good job. Seriously though...I doubt Kaiser would have provided anything less. For some reason, though, I had to cancel that consultation appointment and reschedule. I really can't remember why. Maybe because I was working full time and trying to pull decent...

Dr. Chan had rushed the results of the biopsy so I wouldn't have to wait as long to know if I had cancer. The biopsy was on Tuesday and on that Friday afternoon, I was driving to Pacifica to visit my cousin Nichole. I was between Fairfield and Vallejo on I-80 when Dr. Chan called. She said the results came back benign; the nodule isn't cancerous. I didn't know much about all of this stuff yet. Seriously. So I didn't really rejoice like everyone else did. The way I saw it, I'd have surgery either way. But I guess it felt right to me that I didn't have cancer. It's out of my comfort zone to be someone who has a health issue. But if I had to have one, I really didn't see myself having cancer. So I shrugged it off and waited for the next step.

After I had the ultrasound, I waited to hear from my primary care doctor about what was next. I went on a roadtrip with girlfriends to Southern California and I got a lot of news during that trip. A receptionist from an endocrinologist's office called me and asked to set up an appointment. No one had ever told me why I would need to make an appointment...no one had told me anything about the ultrasound. At this point in my life, I was so so busy and I wasn't going to clear my schedule for something if it wasn't serious. I was working six days per week so I could fit my classes in too. The next bit is just a bunch of awkward phone calls with receptionists and utter lack of communication. My primary care doctor's receptionist actually set up a phone appointment so we could talk, but my doctor never called me. Don't know why. I have not heard from him since. This is all going on during my vacation, by the way. Finally, an endocrinologist called to talk to me abou...

It's hard writing this stuff. It's therapeutic, and that doesn't always feel warm and fuzzy. I had an ultrasound scheduled for the first week in February 2012. When I made the appointment, I couldn't get one any sooner than four weeks out, which I thought was a while. Let me go back, though. My Grandad, my Dad's dad, wasn't in good health stemming from some stomach ulcers and surgery he'd had in November and December. It was sad. My Dad and I visited him on Christmas Day 2011 and it was so emotional for me. He died on January 5. The funeral was on January 14, and it was good timing because my brother Ryan would be visiting from North Carolina. I had oral surgery (four wisdom teeth were removed) the day before the funeral. That had been previously scheduled and I was about to start another semester of college, so I decided to keep the oral surgery date and attend the funeral in Fremont. Fortunately, Johnny drove the two-hour drive to the funeral and back ...

Well hi, welcome to my blog. It didn't occur to me until recently that I may want to look back on this experience I'm having and be able to remember what happened and what it felt like. I was at work one day in December 2011 and in the bathroom mirror, I saw a lump on my neck. I was immediately pretty freaked out. I took a break right then and there to call Kaiser and have an appointment with my primary care doctor. Part of me didn't want to read too much into it or get too worried, but there was a small voice in me, wondering if this was a serious thing. Boy, I didn't know what lay ahead for me. I saw my primary care doctor and he agreed that there was something there. I remember him standing behind me and feeling both sides of my neck. He said my neck had some tension. He had me do an exercise  where I stuck my tongue out and he put a lot of pressure on a part of the back of my neck. It made my back crack. He actually said, "Wow, I can't believe that. It ...