The shutdown caused all treatments to be cancelled beginning in mid-March. At that point, I was clear again with no CTCL spots, so at my next doctor's appointment at the end of March (over the phone), he said that I could just go without treatment until I get any spots again. It's now the end of July, so 4 months and I'm still clear.
I was hoping to have an increase in energy due to not doing the treatments, but my energy level has been getting lower and lower. Probably more to due with the isolation in quarantine. As a teacher, I really miss my students and have realized how much energy I derive from their excitement and enthusiasm. I'm hoping that we're able to get things under control soon so that life can get back to as normal as it can.
Otherwise, I'm doing well. I can't complain. I just drink caffeine on the really bad days to try to get stuff done (anything more than laying in bed reading requires energy I don't feel I have).
Non-CTCL Update to the update on March 29, 2021.
The lethargy continued for months and kept getting worse. It was a major fight to get out of bed in the morning and I was drinking a lot of caffeine just to be able to function at work. I don't usually drink caffeine so this was a major sign something was wrong. In december I got a non-CTCL rash on my shoulder. It never went away and I started getting intensely itchy spots all over my body. I would wake up in the middle of the night with a manic need to scratch. I went to my dermatologist and he mentioned several possibilities including issues with gluten. He prescribed clobetasol and I went on my way. The clobetasol stung so much when I put it on that I would be in tears for about 20 minutes before the stinging died down enough to be manageable. I stopped doing it after a week of no improvements. I also stopped eating gluten just to see if that helped things. Within 3 days, I was amazed at the difference in my energy level. My lethargy was completely gone, I feel so much better and don't need caffeine to get through the day. Still had the rash though. I went back to the doctor and he did a biopsy test for gluten allergy. 2 weeks after that they called me and said that the gluten sensitivity test came back negative. So I excitedly ate regular bread again. It was the worst decision ever. The next day, the lethargy was back with a vengeance. It took about 3 days again of strictly no gluten to get my energy back. The doctor believes it is eczema and recommended restarting the narrowband UVB treatments which I agreed to. It took about 3 weeks, but that was able to completely clear the rash and no more itching.
Although the tests say I don't have a sensitivity to gluten, I feel so much better off of it. I feel like last summer was such a blur, but I'm looking forward to this coming summer and actually having the energy to do things on my break.
