January 2009: I woke up one morning, and randomly rubbed the left side of my neck. I felt two very large bumps, which I assumed were swollen lymph nodes. “I’m just fighting something,” I told myself, and promptly forgot about them. Whether it was denial or just my natural forgetfulness (ok, it was probably denial…), I didn’t do anything about the lumps for about 9 months.
September 2009: I mentioned the still-present lumps to my wife at the time, and both of us agreed that it was time to take some action. There was no way my body was still fighting something for 9 months, and I was fairly confident that the lumps had remained there over the entire course of time. I made an appointment with my ENT, and he confirmed that they were indeed swollen lymph-nodes. We decided to perform a fine-needle biopsy of the nodes. It wasn’t guaranteed to be confirmatory, and sure-enough, the results came back as “atypical.” I had received an atypical diagnosis in the past for a mole on my back that had been removed. I never really understood what that meant, but just had the feeling that it wasn’t exactly cancer... yet. However, my ENT told me that this time, it was a more vague diagnosis than confirmatory of anything in particular, and recommended an excisional biopsy.
January 4, 2010: Over the last month, I had gone from feeling healthy as a horse to feeling completely exhausted, lethargic, poorly-motivated and just downright lazy. VERY atypical for me at that time. I was definitely starting to get worried. The day of the surgery, though, I was surprisingly calm. No idea why, but I was grateful for this fact. They gave me something to calm me even more (I didn’t really need it), and wheeled me into the OR. They attached quite a few things to me, told me to count back…And then I woke up in the recovery room. My ENT just happened to be standing there as I came to. The pathology department at Providence St. Vincent’s is pretty amazing and had already biopsied the excised lymph nodes. (It turned out there were actually three. Two of them had fused.) I was diagnosed with Stage N1b, Papillary Thyroid Cancer. This was basically the least aggressive form of thyroid cancer, which had spread only to cervical lymph nodes and those nearest the thyroid gland itself. But at that moment, I had no idea what that meant, other than the fact that he had used the “C” word and it applied to me.
As I recovered from the surgery over the next week and eventually made it back to work, I became a bit more anxious. I distinctly remember telling everyone at ZRT about my diagnosis on the first day I came back. At first I was relatively calm and nonchalant. By the end of the day, I would almost break-down crying when the words came out of my mouth. I was terrified. And for whatever reason, I didn’t do the slightest bit of research into this type of cancer, so I had no idea just how relatively benign it was – 100% survival rate over the following 5-year period.
By the following week, I started having breathing problems as I went to bed. One night, it got so bad that I ended up in the ER. I was terrified that the cancer had spread to my lungs as well (ThyCa will do that sometimes). It turned out to most likely be panic attacks. My docs gave me Klonopin and Ambien, along with some Albuterol and sent me on my way. I don’t recommend any of these if you have any other option. Especially the Klonopin. Months later, discontinuing the benzo was incredibly rough and resulted in many a sleepless night.
February 10, 2010: Complete thyroidectomy day. As an added bonus, a prior trip to the ultrasoundist resulted in confirmation that I had many other lymph nodes that appeared to be infested with nasty stuff. This time, I was pretty scared. This surgery sounded far more invasive, longer recovery time, many more risks and just down-right scary. The last thing I remember was being rolled into the OR, seeing many more instruments than the previous time, and just being scared out of my mind, despite being pumped full of some benzo or something similar. I slowly, very slowly, started to come-to in my recovery room. My throat was so very raw and dry. I felt terrible. I had no idea that I had been under for seven and a half hours due to some complicating factors. All of my family had been so worried when they hadn’t received any updates after the expected 4hr mark. But at least nothing bad happened, and I was more or less no worse for the wear. The following day spent in the hospital is somewhat of a blur, but again, I remember being well taken care of at Providence St. Vincent’s. I was discharged less than 24hr after waking from the surgery. I was pretty happy with that.
April 2010: Radioactive iodine treatment. Unfortunately, during my ER visit in January, I had received a lung-scan using a tracer-iodine. This upset my endocrinologist (and eventually me too) because it meant I needed to wait a few months for this to clear out of my system before receiving the radioactive iodine treatment. When it was time, I had to forego all thyroid hormone supplementation, as well as go on this special low iodine diet. Those of you who know what I’m talking about realize just how annoying the diet is alone. For those of you that don’t know, one can eat no dairy, soy or eggs or any prepared foods because anything prepared that has salt in it could be the iodized form of salt – big no-no on this diet. It means that when I’m on this diet, anything I want to eat must be made from scratch, pretty much by my own hands so that I am sure there are no ingredients that I shouldn’t ingest. Mix that with the fact that I could take no thyroid hormone (and therefore had no energy whatsoever towards the end of the two weeks) and it was pretty brutal. But after all the prep, I received the tiny pill of 131I (Iodine-131, the same stuff they worry most about during nuclear fallout. That’s what I was going to get pumped full of…). It was about 150millicuries-worth of radiation. Enough to destroy what little thyroid tissue and cells I had left floating around in my body. But taking it meant that after the annoying, somewhat isolating prep for treatment, I had to go into deep isolation because I was technically radioactive myself for almost a week. It is pretty boring spending a week alone in your bedroom with nothing more than Netflix and a good book or two to keep you company, but I survived. My biggest complaint was that my salivary glands became incredibly painful and inflamed during this time. It turns out that, after thyroid tissue, salivary glands come 2nd in iodine uptake, so they were getting bombarded by the radiation as well. It passed.
The following months of recovery went quite well. I got back into exercise pretty quickly. By May I had even started doing P90X. For those who don’t know, it is a multi-DVD workout program which is incredibly intense, and lasts for 90 days straight. I did it two full sessions in a row, not terribly long after the surgery. I was pretty thrilled.
January - October 2011: So, remember those inflamed salivary glands I mentioned during the radiation treatment? Well these decided to re-inflame in a horribly painful manner, getting me to the point that I was on a heavy pain-management regimen. It took months for this to pass (after I had been assured that it usually passes in weeks), and then coming off the opiates was absolutely brutal. As with the Klonopin, I would highly recommend not using those unless they are an absolute necessity. To be perfectly honest, this stage of my “thyroid cancer process” was probably my least favorite, which is saying something for sure.
Now: It has been over 4 years since I was diagnosed and treated for this not-so-deadly, but fairly annoying cancer. I have had to receive two more scans, which meant I had to go off my thyroid medication and onto the low-iodine diet for a few weeks. It is still just awful going through this process, though I suppose things could be worse. All of my blood work is very stable. All of my scans are good. And I was given the all-clear for 3 years without a scan this most recent visit because everything looks so good. I feel healthy, and happy, and overall, my life is very good and enjoyable once again.
The Bad News: This is such a slow-growing, non-aggressive cancer that I need to wait until 2020 to be declared officially clean and clear. I’m not too happy about that, as it means a few more scans, which are very inconvenient, frustrating and annoying, and always have the possibility of bad news – return of cancer somewhere. I’m pretty excited to be done with it, and very optimistic and hopeful that I will never need another surgery or 131I treatment again. Keeping my fingers crossed…
If anyone has experiences they would like to share, please do. I’m also happy to answer any questions.