Welcome to my little island on the interwebs. The purpose of this blog is threefold for me. First, I want to chronicle what I have experienced living with thyroid cancer up until now, and what I will experience in the future as I continually work towards accepting my disease. Second, I want to hold myself accountable as I embark on a new chapter in my life--living primal (more to come on this in future posts). Finally, if there is anyone out there in the vast ether of the internet who is going through what I am going through, I want them to feel slightly less alone. Try to bear with me on this first post. It's going to be a long one.
Let me start by saying that I am a very lucky person. I try hard to never forget that. My thyroid cancer was found completely by accident--by my dermatologist, no less. I went in to see him because I had a rash on my legs after I had returned from a trip to Europe. I am very fair-skinned and he wanted to check me for skin cancer as well. He did a cursory thyroid exam that was more thorough than any I remember having before the cancer was found. He said to me, "Your thyroid is kind of easy to feel. Have your primary care doctor check it out at your next physical." That was December 6, 2005.
I followed up with my primary care doctor at my scheduled physical. He agreed with the dermatologist and scheduled me for an ultrasound. Shortly thereafter I met Bob the Nodule. He was approximately 1 inch in diameter and located on the left lobe of my thyroid. I was continually reassured that the likelihood that Bob was cancerous was very low. I had many factors in my favor. I was female, and only 23 years old. How could it be cancer?
Everything else happened very quickly. On January 16th my endocrinologist performed a fine needle aspiration biopsy. I would be lying if I said it was a pleasant experience. He had trouble getting enough cells, and had to repeat it five times. I should have taken someone with me to that appointment.
I got a phone call the next day while I was at work. It was my endocrinologist calling to inform me that the results were in, and it appeared to be cancer. He said a lot more than that, but I honestly can't remember what it was. I tried to write down a phone number so that I could schedule an immediate consult with a surgeon. I failed. My endocrinologist could tell that I wasn't functioning and offered to set up my appointment for me. I gladly accepted and hung up the phone. He called back in a few minutes to tell me the time and location of the surgery consult. I know I called my parents that day. I remember calling my sister too. I don't remember much else.
The next day I saw my surgeon for the first time. He explained to me that the surgery was very straightforward and we needed to schedule it ASAP. I hesitated a little, and he questioned that. I just wanted to make sure my family could be there on the date we had chosen. I felt a little better after he had explained things to me. The fixed schedule of appointments that had been laid out before me appealed to my scientific nature. We had a plan. I liked that. He said that they would only take the half of my thyroid with the tumor. While I was in the operating room they would stain a cross section of the lobe with the tumor to determine, finally, if it was cancer. If not, they would leave the other half of my thyroid so that I would have some natural thyroid function left. If it was cancer, then they would take the whole thing out and I would go on replacement hormone for the rest of my life (Synthroid).
On January 24, 2006 I went in for my thyroidectomy. The day started before 5am--I was the first surgery of the day. Once I was settled in I said goodbye to my mom and the nurse came to wheel me in to surgery. She made small talk on the way to the OR. "Where do you work?" she asked. "I'm in the cancer biology graduate program at the university," I replied. "Oh, that's ironic," she said. Nice, right? The only other thing I remember is having trouble breathing right before they put the mask on me. Then, nothing.
I woke up in recovery. It was too bright so I asked for something to cover my eyes. I remember having to go to the bathroom very badly, which I announced to everyone in recovery. I also related that story to my mom as we went by the waiting room to get her. Everyone there heard me too. I had no idea there were other people around since my eyes were covered. Something funny had to happen along the way, I suppose!
After awhile, a doctor came in to tell me that the Bob the Nodule was, in fact, cancer. The surgeon had found three positive lymph nodes as well. When I asked how he knew which lymph nodes to take out, he informed me that they had turned black. The next steps had already been explained to me. I would be put on replacement hormone for a short time while I was recovering. Then I would go off my meds to prepare for my radioactive iodine (I-131) ablation. The goal of going off meds is to raise my thyroid stimulating hormone (TSH) extremely high so that any remaining thyroid tissue/cancer will more readily absorb the iodine. Once the tissue has absorbed the I-131, my body's immune system will destroy the cells. Then, the cancer would be gone, and I could go on with my life. I can say now, that it isn't quite that simple.
I had to stay overnight in the hospital so my parathyroid function and calcium level could be monitored. The parathyroid glands are very small and basically buried in the thyroid, so it is not uncommon for them to be accidentally removed during surgery. I was by myself, and it was the loneliest night of my life. I couldn't wait for my mom to come back in the morning. The waiting was so difficult. My surgeon had done a fantastic job and my parathyroid function and calcium levels were stable the following day. They released me to go home, and I had no idea how draining that process would be. I could hardly hold my head up. My roommate had to brace my head from the backseat to keep me from crying. Every move I made was excruciating. I remember sitting at the pharmacy while my mom picked up my pain medication and thinking that I should be embarrassed because of the iodine all over my neck and chin. I didn't even consider the fact that I had a giant, red slice across my neck as well. I was too tired to be embarrassed anyway.
I didn't allow myself to recover as long as I should have. I felt an obligation to get back to work. I suppose I was a little bored as well. The longer I was off my meds, the worse I felt. By the time I went in to have my TSH checked one week before the ablation it was at 146. A healthy person should have a TSH between 1 and 5. The higher you go, the more hypothyroid you are, meaning your thyroid is underactive, or in my case, gone. I had my 2mCi tracer dose of I-131 on March 14, and a whole body scan the following day. The scan showed minimal uptake in the thyroid bed, meaning the surgeon had done a great job removing my thyroid. There were no additional positive nodes on the scan, or any other metastases. We could proceed with the ablation to get rid of any thyroid tissue or thyroid cancer left anywhere in my body.
I took my 96mCi pill of I-131 on March 16, 2006. That's five years ago to the day. I was isolated for about a week at home. I didn't interact with my roommates or my cats. I ate off of disposable dishes, used plastic silverware, drank through straws and had a separate bathroom. I played a lot of World of Warcraft. I started feeling worse and worse. I had been started on Synthroid immediately after the ablation, but it takes 6-8 weeks for the levels to stabilize in your body. I felt terrible. This phase is known as "hypo hell" for a reason. I was cold all the time. I was sleeping for about 20 hours a day. My hair was falling out. I was pretty much non-functional. I slowly regained some energy as the replacement hormone started to stabilize in my body. I lost my sense of taste for awhile after the I-131. Luckily, it came back. By May 26, 2006 my TSH was down to 20. Still a long way to go, but we had to make adjustments in dose in small increments since the relationship between Synthroid dose and TSH is not linear.
I had started working on a regular basis again. The most frustrating part about being hypo was realizing that my brain was not functioning how I wanted it to. I couldn't trust my brain to tell my hands to do the right things, and my science was suffering. I knew if I waited long enough for my TSH to get down to where it should be, then I would be able to do my job well again. It was a long wait. In July my TSH was 13. In September it was 1.73. I was starting to feel human again.
As a cancer patient, we were shooting for a TSH of under 0.3. If the TSH gets too high, it signals the pituitary gland to tell the thryoid to grow and make more thyroid hormone. If that pathway is activated in a ThyCa patient, the only thyroid tissue that could be left is cancerous. The last thing we want is for the cancer to grow, if there is any. So my goal for the next 3-5 years was to keep my TSH low. To keep myself hyperthyroid. To prevent that signaling pathway from being activated by taking a high dose of Synthroid. Being hyper comes along with its own fun set of side effects. I had heart palpitations, muscle pain, fatigue, trouble falling asleep, and trouble regulating my body temperature.
For the past five years I've been in a state of semi-controlled chaos. I see my endocrinologist every 6 months. We adjust my dose of Synthroid often. My body seems to use it differently in different seasons. I started having neck ultrasounds every six months about a year and a half ago to monitor my remaining lymph nodes for changes in size or appearance.
When I hit the four year mark my endocrinologist and I discussed how I was feeling. Basically, I had been exhausted for four years. We decided that we would back off my dose of Synthroid a bit and try to let my TSH come up to approximately 1.5. That is where I had been before diagnosis. It is a reasonable number for someone four years out. We dropped my dose down and my TSH went up to 3.5. Way too high. We have been working on bringing it down ever since. Last time we checked I was at 2.14. I have had a combination of hypo and hyper symptoms for about a year now.
On September 21, 2010, I had my most recent ultrasound. My doctor called while I was vacationing in northern Wisconsin to tell me that my lymph nodes had grown since the last ultrasound. He was worried about this result and wanted to look into it further. I went in for a PET/CT on September 30th. My mom went with me to the appointment. It was a long appointment, but the results were almost immediate. The scan was negative.
We continued with two more tests. First, I had a course of Thyrogen to artificially raise my TSH so that any remaining thyroid tissue/cancer would be more able to absorb iodine. Then, a 2mCi tracer dose of I-131 and whole body scan. Then, blood work to check my thyroglobulin levels. The scan was negative. However, my thyroglobulin levels are slightly elevated. This means that something is growing somewhere, we just can't see it yet. So, we wait.
Am I upset? Yes. Am I devastated? No. All I can do is get through it. One day at a time. I can be as proactive as possible. I can make my life with ThyCa what I want it to be. I've been seeing a therapist since September, and she has helped me in more ways than I can possibly explain. I'm finally starting to feel like me again and not just a cancer patient. I hope I can hold onto that throughout whatever happens in the future.
I go in for a visit with the endocrinologist on Monday. I'm having my TSH drawn in a few days. After the office visit we will set up another Thyrogen stimulated thyroglobulin blood test, as well as another neck ultrasound. Once the results are in, we decide if more scans are necessary. I'll update soon.
Until next time, Check Your Neck.