My Experience With Thyroid Cancer

Wait, am I not done learning lessons? Argh. So I thought I would find out last week if I have to have radioactive iodine again, but it turns out that I won't know until later this week. My test results are usually available the next morning, but apparently thyroglobulin doesn't come back so soon. I didn't ask my endocrinologist before the blood tests when I would know the results, so I made a wrong assumption. I've done that many times, and it's not any less disappointing this time versus in July when I assumed I would know other results. Friday morning I woke up to an email from Kaiser that I had test results ready, which I get every morning after I get blood tests. The only results available were for my TSH and free T4 unfortunately. I asked my endocrinologist and she said the test for thyroglobulin was sent to the University of Southern California and we'll have the results in a week or so. So that's a bummer. My TSH was 0.01. It baffles me that it could

I'm due to have labs done on Thursday. I should know at that point if I need to have the radioactive iodine again. I'm really hoping I don't have to do it again, and there are so many reasons for that. Firstly, I really don't want to take three or four weeks off from my job. I especially don't want to take a break because I'm in the new position. Also, as of today I still haven't received any disability payments from my surgery in September. Today marks 12 weeks ago that I filed my disability claim. Like literally right now I'm steaming at the ears thinking about it....so my finances are screwed and I don't think I can bear another lapse in work. And also, being sick hurts and I'm done hurting. A word about the disability stuff--it's impossible to even try to speak to someone about the issue because no matter what day of the week or time of day that I call EDD, I get a message that the maximum number of callers has already been reached that

I haven't written in about six weeks! There's been a lot of life in these last six weeks too. I think that I did a lot of blogging in October and that had me taking a good close-up look at my life. A lot. And I needed to take a step back. I think there is such a thing as too much self examination. I took another day trip to Lake Tahoe with my friend Olivia before I returned to work. Remember we went right after I learned I'd need a second surgery? It was nice to visit again in cooler weather, and in better health. I went back to work on November 5 after seven weeks off. I think my superiors would have understood if I wanted to take it slow, but I wanted to go back full time. At this point I had not gotten any disability money, so I was hurting financially. I was told that EDD in California switched over to an electronic system right when I filed my claim, so I should expect delays. I wasn't expecting a seven week delay because when I had claims this summer, I alw

Hmm where to start? I'm still off work, I think next Monday I'll go back. I'm a little bummed that I won't be working on Halloween because I like to dress up. It will be nice to earn a paycheck, though. I have been on disability this whole time, but I haven't received a dime. I finally got an email letting me know that EDD is back logged with claims. I have to pay the rent again on Thursday and it's painful having to part with my savings. My family has always helped me when I've needed it, though. Both my mom and dad have stepped up at different times. My sleep has been all out of order. I have to remind myself that that's one of the possible side effects of being hyperthyroid. Last night I didn't fall asleep until 3am. I was so disappointed to wake up at 9am. Fortunately I fell back asleep until 1pm. This isn't gonna fly when I start back at work. I've got to transition back to a regular schedule. My decreased appetite has been interesting

One of my favorite bands is Fleet Foxes. I've listened to them constantly ever since I saw them on Saturday Night Live years ago. Soon after my second surgery when I was all feeling good from the pain medication, I wanted to listen to some of their music. That's not something I usually do when I'm in the hospital, but I did. I don't usually like to buy music either, but I wanted to hear a song that I didn't have. I went into iTunes on my phone and bought Tiger Mountain Peasant Song. I listened to it a few times. Just so calming. Johnny and I saw them live at the Greek Theater in Berkeley last September. I count that night as one of my all time favorite experiences. I thought of that tonight and thought wow, what a change from September to September. Then I wondered what the date of the concert was last year. I looked it up and found that the concert last year was September 14, the same date as my surgery this year. I was totally surprised. So unbeknownst to us, we h

Well, it was a little over six months ago that I was diagnosed with thyroid cancer. A lot has happened! Here's an update. This is 21 days after my second surgery. One of the risks my surgeon had mentioned was a crooked smile, and there it is. I know it doesn't look noticeable to you, but it is strange for me to see in the mirror. Try as I might, my lip just doesn't come down all the way like the other side does, to expose a full smile. People have said, "Oh, that's nothing, you look fine." And I guess those people don't understand it. I posted this on Facebook and people said nice things, like that I look pretty, and that's fine. But I really don't need the reassurance that it's nothing. I don't need you to tell me my crooked frickin face is just fine. You stand in a mirror and try to move a muscle that won't move, and tell me that's just fine. You might think you're being nice, but it comes off as invalidating the nerve dam

Well, I'm officially current here. I'm no longer telling about what happened weeks and months ago. So glad to be caught up! So at my post-op appointment, my surgeon said the incision looked great. I was just so glad it didn't come open like last time. It was surreal walking out of there with my mom, having gotten good news. It's literally never happened. Seems like I always leave Kaiser bummed out. So I rested a lot the weeks after surgery. Lots of time spent on the couch. My surgeon referred me to a physical therapist because of the shoulder pain I've had. So today was that appointment. The PT was nice and he showed me a lot of exercises to do to help the tightness in my neck and shoulders. It's not just that I have pain and can't lift things with my left arm; I can't turn my neck properly and I can't bend it back to do things like rinse my hair in the shower. (To rinse my hair, I have to adjust the shower nozzle and then arch my back in a way t

The week leading up to surgery is usually a mixed bag. I have a great excuse to indulge and eat delicious food because I know soon I won't be able to. But I also try to make sure my house is in order and everything. It's scary wondering, "What condition will I be in when I come home?" So this is 16 weeks post-op, right before the second surgery. This time we had to be at the hospital at 5AM. My boyfriend grumbled about it, but I was glad to get it over with. So we went in, I pee in a cup, put on the gown and wait. Dr. Doctor came to talk to me about the surgery, which is standard operating procedure. He casually mentioned he may have to re-incise the original scar on my neck in order to accomplish what he needed to in there. I'm thinking, "What?!" But whatever. I finally fell asleep. And then I woke up! I was in a lot of pain and like my first surgery, all I remember was asking for pain medication. And I honestly don't even remember that .

My cousin Nichole came to Auburn and spent some time before my pre-op appointment for the second surgery. My Mom has always been available to take me to everything, but it became too much. Too much of one person. I made a selfish decision to bring someone else with me, and I don't regret it. That was quite a lesson for me, just the whole thing. So I went into that appointment pretty uninformed about what would happen. They didn't tell me much beforehand, so I learned a lot. The technical term for the procedure is a lateral neck dissection. That indicates that lymph nodes are being removed. (I'm immersing myself more in online research and thyroid cancer online forums, so I'm starting to know my stuff). Dr. Doctor wanted to basically slice up the left side of my neck to remove as many lymph nodes as possible. The theory he outlined was roughly, "Let's get all that we can while we're in there." I remember him saying, "I don't want to be pickin

Can I just say that I'm happier now than I have been since this all started? I feel so grateful to be surrounded by amazing women who value introspection and personal growth and have helped me cultivate growth for myself. (Ahem Kristen and Hillary). I've been thinking things over and I came to some decisions about how I feel about everything. I just started to feel like, maybe I'm not bigger than cancer. Maybe I don't have to be bigger than cancer in order to survive. I look back on the last few months and cancer has screwed me over; it's caused me pain and hurt my relationships. And I don't think I was conscious of this, but I think I've been angry with myself for not overcoming it and being bigger than cancer. Like I really thought I ought to be bigger than it. That's what everyone says, right? All these PSAs say, "Beat cancer." And I'm a pretty capable person. I'm young and I have a lot of people behind me. I don't have the worst

There was a lot of confusion around the time of and after the RAI treatment. I attribute this to the communication I had with my radiologist. He was kind of rough around the edges. After a while, I came to the conclusion that he may be real smart and he may know science and medicine, but he must be new or something. He didn't seem very good at treating people . This gave me a great appreciation for my endocrinologist. She's great. So anyway, of course I was dying to know what would come next and my mom and I asked him many questions around the time of the RAI. He'd kind of brush me off and say, "Yeah, yeah." So I thought I'd know the results of the RAI, like right after. But that wasn't the case. I came back for another appointment and I thought I'd be getting some answers, but he had none. He explained that the medicine was still working in my body and would continue to work for a few more months. He said I'd get some answers in a few months. I

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