It has been a bit more than six months after my radiotherapy treatment for thyroid cancer, and I feel pretty much normal. Several times over the past few months, I have talked to people I have not seen in a while and they have asked me how I am doing. At first I just say “fine”… and I then realize that they are asking about the cancer. It’s not top-of-mind for me since I have been living with it for almost a year now, and it feels (currently) like it is “done”. Of course, it will be years before I am formally considered to have fully recovered, but right now I feel like I am functioning mostly normally (except a small side-effect from the medication).
Getting Back in Business
My last update was written as I was in isolation after radiotherapy. Following the hospital time, I stayed one night in a hotel to get the radiations down a bit more before going home. Once home, it was just me and my wife for a few days until the kids got home from their fall break. Until two weeks had passed after the radiotherapy, I made sure to sleep in my own room and stay several meters away from all the other family members.
I went back to mostly normal life just in time to give a talk at the Embedded Conference Scandinavia in early November. Guidelines from the hospital were that I could be around people again by then, but preferably only for a short time and keeping some distance. Giving a talk from a stage kept a safe distance for the audience, and I skipped the conference dinner.
At the talk, a friend of mine showed up with a Geiger counter (he works in a company where they use such instruments), and I got an actual measurement of the situation post-therapy. It turned out that while there was a noticeable amount of radiation right at the skin of my throat (which I suppose indicates that the radiotherapy did hit the right spot, but I am not a doctor and cannot know for sure). More importantly, at a distance of about 50cm the radiation level was indistinguishable from the background radiation. That felt pretty good to know, as it did indicate that the risk I posed to other people was rather limited already at that point.
Later in November, I went to India to teach a long-planned Simics training. There was some (theoretical) concern that I might get caught in airport security somewhere due to being radioactive, and I did have a letter with me certifying that I undergone radiotherapy and explaining the situation. However, nothing happened and the trip went off without a hitch.
Thus, radiotherapy was “done” after a couple of weeks and life could go back to its normal routine. It is noticeable just how unaffected I was from this treatment. It is highly localized and should not really affect your system much. I basically felt nothing. The big question was obviously if the therapy had done its job.
Answering that questions comes down to taking blood tests to check for indicators that I should not try to explain. The first tests late in 2019 came up inconclusive, and I stayed on the rather high dose of 175mg of Levaxin per day. Recently, the second test indicated that the process is going in the right direction, and I could lower the Levaxin dose just a little: taking 150mg every second day, which lowers the average just a little to 162.5mg per day.
Levaxin and its Side Effects
That leads on to my last observation about the cancer treatment: taking a high dose of Levaxin has side-effects. Even before the cancer, I was known for my high tempo and high energy. Taking 175mg of Levaxin definitely exacerbated that to the point that it has been a bit tough for the family and close to debilitating for me. It is like having a little rocket push you around and losing a bit of self-control and self-restraint.
With the Levaxin, I have had a harder time focusing and actually finishing something that I start. It is like my brain is on a slippery surface and kind of skids around, requiring a conscious effort to stay on task. I left a trail of half-done to-do notes for myself in Outlook at work. Sometimes, it felt like being slightly drunk, and unable to stop myself from doing things even if I knew deep inside that it was unnecessary or not a good time. Overall, a slightly disconcerting experience.
One particularly visible aspect of this is that I have had a hard time getting around to writing and finishing blog posts (which is clearly visible in the output on this and my Intel blog). It has been too easy to get distracted with shorter-term tasks and interruptions at work and at home.
However, lowering the dose just a little made a huge difference. I feel much better, like some kind of fog has lifted. I feel calmer and less jittery. I am really looking forward to the next step in lowering the dose. Even 150mg is fairly high, but it seems closer to the level of drive I had naturally before the cancer. Clearly, I won’t do anything until I get instructed by my doctor. Right now, the plan is to try the lower dose for a while, take new tests, and check that nothing creeps back in. The standard procedure as I understand it seems to be to run a high suppressing dose for something like a year after the initial surgery. I will find out this coming Summer I suppose.
This was written and posted in the middle of the Covid-19 pandemic. My personal process with cancer goes on regardless of the much bigger issues in the world, and I wanted to get this update out since I myself got updated rather recently. And the question comes up every so often.