My Experience With Thyroid Cancer

I'm thinking of my friend Matt a lot tonight. I heard a very tragic song tonight and it brought up a lot for me. Apparently Chelsea Hotel No. 2 by Leonard Cohen is a well known song about Janis Joplin. I adore Janis and a poster of her hangs on my bedroom wall.  I guess I'm still coming to terms with the fact that good things end too soon? My experience with cancer (that's the name of the blog, right?) has changed me. I think it's brought closer to the surface the darkness we all have inside of us. I heard a different song today (Innocent Son by Fleet Foxes) and it reminded me of the two months after my second surgery where I stayed up until 2am most nights listening to music and online shopping. Darkness. The quiet moments no one sees. I was going back through older blog posts and I was shocked to see this picture. I've just had a really emotional reaction to this tonight. I can't fathom that that's how I looked. It must be someone else...

Last week, I got some legitimately good news. My thyroglobulin level came down to 2.1! This means the radioactive iodine is still working in my body, eight months later. Remember that because I have thyroid cancer, that number needs to be 0 for me to cancer-free. Thyroglobulin measures thyroid cells in my body. They also test for thyroglobulin antibodies and I'll be honest, I still don't understand that piece. I've asked my endocrinologist a few times, but it's never clicked for me. Let me give you an idea of where these levels have been. I went back through all my tests results online and it's all dated. These are the total thyroglobulin, not the thyroglobulin antibodies. (9.7) 7/11/12--Two days before radioactive iodine. (6.1) 8/28/12--Seven weeks after radioactive iodine. They thought it would decrease more than it did. Then they found the second malignant tumor and that explained it. (3.0) 12/20/12--Fourteen weeks after second surgery. Because it went down t...

I have made immense progress physically since the beginning of the year. It's funny because I got pretty lazy with the physical therapy exercises I was supposed to do. I've been going to yoga as much as possible and I think that had an impact. One day I was standing in front of the mirror stretching my arm and I found that from my arm hanging at my side, I could reach all the way up without any pain. I was shocked. Today marks 25 weeks since my last surgery and I have very little numbness. The space where my neck meets my jaw still feels a little "asleep" if that makes sense. But right now I'm generally able to do things like I used to. It feels like a whirlwind and I can't believe it's been 25 weeks. Here is a picture my Dad took. We went hiking in the hills of Livermore and stumbled on a beautiful vista. Arms straight out! A few weeks before I went to visit my Dad, a friend I knew from high school died. His name is Matt and he was 20 years old w...

So two days ago my test results came back finally. Remember weeks ago when I wrote that I was getting blood work done soon and would know if I have to have radioactive again? Hah...yeah...I thought I was going to know about the thyroglobulin the next day, but it turns out that had to be sent to the University of Southern California. I got the results 18 days later. I should know better than to expect things to happen in any kind of time frame that I would imagine them happening. So the thyrogloublin is at 3.0. So it wasn't at 0, which would have meant no cancer, but it didn't increase either. So I can sleep easy knowing there's nothing else growing inside me. My endocrinologist said she and my radiologist needed to confer with their colleagues and get back to me about whether I'd need radioactive iodine or not. So there was more waiting. She was to call me today at 11:30AM. Of course the call didn't come in until 12:15PM. She said I don't need to have radioa...

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...