My Experience With Thyroid Cancer

I had labs done and I had an ultrasound this month to check on how things are moving along one year after radioactive iodine. The ultrasound revealed three small lesions measuring roughly 5mm each. My endocrinologist described them as being too small to biopsy, but she can tell it's thyroid tissue. One mass is in the thyroid "bed" where the thyroid once was and two are up by the angle of my jaw. Those are lymph nodes and I'm told my surgeon probably couldn't see them during the second surgery because they were so small. So they were left behind and they have grown a little. My thyroglobulin came in at 2.3. It had been 2.1 in February. Dr. Chan said that's good news. I guess it's good that it didn't skyrocket.  I'm currently waiting to hear what they want to do. The nuclear medicine doctor says the lesions are too big to be completely eradicated by radioactive iodine alone. My surgeon says the cancer is too small to be seen in surgery. So what is go...

I wanted to show you guys how I eat vegan throughout the day. This was fun, and I'm looking forward to doing it again. Please know the context of this day: this was a Saturday and I laid around without doing much, so I wasn't super focused on being energized. This wouldn't sustain me on a day where I work and exercise. So here's what this lazy vegan ate today: Breakfast: 20 oz coffee with raw sugar and coconut milk creamer  •  strawberries  •  poppyseed bagel with Natural Balance dairy-free butter Snacks: store-bought tortilla chips and salsa. No, I'm not granola enough to be making those from scratch just yet.  •  smoothie made from the following: one banana, one avocado, orange juice, strawberries, 1/4 unpeeled cucumber, chia seeds, lots of spinach, fresh lime and ice.  Dinner: lentil cous cous salad with spinach, basil, oil and vinegar, garlic, lemon juice, red bell pepper and eda...

Firstly, one year ago today I had 150 mci of radioactive iodine. I'm so grateful 365 days have gone by. That was a such a hurdle for me, and I'm so glad to see it in the rear view mirror.  So it's that time of year again, and I'm having tests and things now. I had labs done yesterday and saw today that my TSH is at 0.01 again. That's odd because that's what it was in December, right before I asked my endocrinologist to please adjust my dosage because I didn't like the side effects I was experiencing. She made the adjustment, and my TSH was up to 0.02 in February. So I don't know how it's dropped again, which as you may remember actually means I'm more hyperthyroid. The area where I live gets pretty hot in the summer, and as a person I just run hot most of the time. But lately I've been wondering if I might be feeling hotter than others. I've just felt feverishly hot lately. There is the possibility that I'm just imagining it. I...

I've meant to catch up and mark the one year anniversary of my diagnosis, but I've been super busy living this life that I've gotten back. May 2nd was a strange day. I just can't believe it's been one full year. I'm super grateful for where I'm at now. June 1st was also odd, to think that this time one year ago I was in the hospital. And right now, June 19th a year ago, I was struggling with an infected incision. Yuck. I must say life afterwards is tough. I feel like people don't really talk about it any more. No one really asks about it. I find myself wanting to talk about it. This reminds me of Samantha on Sex and the City having breast cancer and Smith seeing a counselor, but Samantha not seeking that out. Anyway. People ask how I'm doing and there's innuendo on what they're referring to. I don't know, I guess I just have a lot of reflecting to do. My Mom and I were driving this weekend and talking about where I was a year ago. I...

"I'm doing the vegan thing," is what I tell people. I guess it's a way to distance myself from the new lifestyle I'm actually embracing. Odd. My boyfriend started flirting with the vegan diet in December and within a few weeks had cut out animal products altogether. I cackled. I had big belly laughs. And then I made the same choice. I'm probably not doing the vegan thing the "right away" or anything, but I can tell you that I feel better and it's feeling like it was a good choice. I gained 10 lbs since I was diagnosed with thyroid cancer because I gave my myself permission to do whatever the hell I wanted, and so I've ended up heavier and with more material possessions. Sigh. There's information out there that observing a whole foods, plant-based diet gives you the best chance of not having cancer. Yeah, I know I'm a day late and a dollar short on that. But I'd love if I never have cancer again in my life. I'm in no po...

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...