It Gets Harder
The End of Radiation Treatment
I have, as of this writing, completed 28 treatments of radiation. On 28 different days I have gone into Massachusetts General Hospital, taken the elevator four stories below ground to where the radiation treatment is administered, and laid on a table while a team of well-trained proton beam specialists send radioactive isotopes into my skull base to kill any remaining cancer cells. At first, this experience was pretty boring; I described it as a “non-event”, but as the treatments have continued the experience has gotten more difficult. The effects of the treatment are cumulative, so during the first three weeks I barely noticed any difference, but the last twelve sessions or so have been hard and I feel exhausted.
The most acute problem is, after radiation, I am nauseous. My stomach feels upset and uncomfortable. One time I went for a car ride right after radiation and almost lost my lunch. The only activity I can do for an hour or so after radiation is just lay in bed and play on my phone or watch TV. Fortunately, while I am feeling the nausea, Neville (our dog) is thrilled to hangout next to me. If I have to experience nausea, lying in a cozy bed next to my dog makes the overall experience markedly better.
Neville on the couch with me after one of my treatments this week
The less tangible, but more profound problem, is that I have much less energy. I feel like the moment I wake up my battery is at 60%, and it drains to 0% pretty quickly. While the nausea is not fun, I am grateful that it forces me to slow down in the middle of the day and recharge a bit. I don’t have the same drive for certain activities as I used to. When we first got to Boston, I spent most days exploring new parts of the city and surrounding areas. Now, the idea of focusing intently on a map and walking through an unfamiliar neighborhood seems exhausting. I am currently furloughed, but if I was working (or if the government reopens before my treatment is over) I would need to take sick leave. I do not have the energy to focus intently on writing code and explaining statistical findings.
This isn’t sleepiness, I can’t solve the problem with coffee or just a good night’s sleep, I feel like my brain just moves at a slower pace, and mustering the energy to concentrate is much more difficult than before. This sensation is new (I only began to feel it just about two or so weeks ago), and I am having trouble understanding it. I had been going at my normal pace and enjoying life, but then in early October, I began to feel drained around 4:00 or 5:00 in the afternoon. I began to feel as if I am (to quote Bilbo Baggins) “sort of stretched, like butter scraped over too much bread”.
The lack of energy has manifested in weird ways. I feel like I do not have the same energy to chat when people call. My friends and family have been incredibly attentive, and they will often check in just to say hi. Normally when a friend calls, I can chat for hours, but now I have about enough vigor to chat for 30 or 40 minutes and then I just don’t feel like talking. I don’t have it in me to keep asking questions, even though I want to. I spoke with a friend the other day when I was walking, and when we got off the phone, I just sat on a bench for 20 minutes and drink some Gatorade. I was like an athlete coming to the sidelines, but my workout was just a phone call.
I have noticed how this lack of energy also affects my emotions, or rather my emotional regulation. Towards the end of the day, I will start to feel very anxious. In my life as I have experienced anxiety, I have learned to dismiss most anxious thoughts or at least contextualize them so they don’t take hold of me in the moment. The other night I began to feel anxious about my job given the government shutdown and discussion of layoffs, and I ended up spiraling and searching for jobs on LinkedIn for over an hour and a half. Normally when a thought like that would pop up, I would acknowledge the thought and then acknowledge that there’s nothing I can do to fix it and then get on with my life and focus my attention on something actually useful. Now however, I don’t have the energy to deal with anxiety, which means the anxiety persists longer than I’d like it to.
While this is unpleasant, this lack of energy is nowhere near as bad as how I felt after surgery. When I was recovering from surgery, I was so exhausted I felt a sense of despair. I was not sure if I would ever feel close to normal again and the fatigue was genuinely painful. The fatigue was all consuming. Now, I know I’ll recover from this, so there is a sense of hope, but on a day to day basis, while I am tired, I also am not feeling too miserable, I’m not in pain. Some encouragement has come from the doctors, who have said that this is all normal. They have reassured me that, though this is not ideal, feeling burned out is to be expected, it is completely normal at this stage in the experience, and all things considered I am doing well.
There are some things I do that have made this experience more manageable. One of the things that has made a world of difference is that I have been receiving acupuncture, which has been is amazing. I just barely feel the needles hit my skin, but once they are there, my mind almost goes blank. I sit in a recliner as my thoughts leave my head one by one. I don’t sleep through it, but I get about as close to sleep as possible without having my eyes close. While I am in this state, all of the charged emotions and the thoughts that were previously coursing through my brain all seem to evaporate. When the acupuncture is over, I feel like I can focus on anything I want. All of annoying thoughts that were distracting me when I walked into acupuncture are gone and my attention is free to focus where ever I direct it.
My arm with three acupuncture needles in it
The other activity that helps is walking around. I have gotten familiar with a few neighborhoods near us, and most days after I receive radiation, (and relax with Neville) I will get a snack and walk from Mass General to Cambridge or to the Boston Commons and back. The walk all told is a few miles, and I do what I can to make it as enjoyable as possible. I’ve curated a few playlists and I walk it slowly so I can enjoy as much of the scenery as possible. I don’t know why walking around has helped so much, but my mood feels exceptionally better after every walk. Both walking and acupuncture make me feel notably better and have buoyed my spirits throughout my time getting radiation. These activities both make me feel joy in the present and give me hope for the future.
My view of the Charles River from the Longfellow Bridge while walking to Cambridge
This all is pretty strange. For most of my life, during both good times and rough times, I’ve always felt energized. Sometimes my energy is focused on the wrong things, but the only other times I have felt drained for a number of days has been when I am sick or in a great deal of pain. For about three weeks now, even when I generally feel good, I still don’t have the concentration or stamina I am accustomed to. I suddenly will get sleepy at 5:00 PM. There are times I want to read a book, but I don’t have the ability to focus to get through more than a few pages. Out of nowhere, I’ll start to feel anxious or cranky at random times in the day (I have a new appreciation for what toddlers feel when they do not get their nap). If I am not getting acupuncture or walking around, anxious thoughts stick around in my mind much longer than normal. I am only now realizing just how many different things, especially certain emotions, I unconsciously and involuntarily devoted energy to.
The bright side is that, in a few weeks from now, my energy will start to come back. It will come back slowly, but I will begin to feel more normal with each coming day. I won’t need a nap at 4:00 PM and nine hours of sleep at night will not be a minimum amount of sleep but will be more than sufficient. As this happens, I am optimistic that I can be more conscious of what I let consume my energy. Hopefully I can have the energy to write more about that as it happens.