Remission! And Next Steps

Another week has slipped me by. Monday’s appointment delivered the news for which we had hoped: 0.00% diseased blood cells in my latest sample. This is a major milestone, and means that I am officially in full remission. Woo-hoo!

Next step: two weeks off of treatments, then on to the Consolidation phase. To put a little extra reality onto it, this does not mean that I am completely safe yet. In the study upon which my treatment is based, the one patient death happened during Consolidation. Although the cancer is gone and likely won’t come back, the treatment still puts me at increased risk of other infections.

As a result, I am maintaining extreme caution in avoiding exposure to pathogens, and giving my body everything it wants to keep my immunity up. If I feel tired, I pause whatever I am doing and go to sleep. I don’t try to “power through” adversity as I normally might. That makes it really hard to commit to things, and that’s a major part of why I haven’t yet returned to work.

Speaking of work, my current plan is to begin working a handful of hours per day next week as my energy level permits. All of it will be remote, from home. This will afford me quick access to comfy, horizontal surfaces in case I need a rest; and it will keep me away from the nasty cold bugs that are still circulating mightily through my team at work.

Since stopping the treatment on Monday, I think I am finally feeling the side-effects begin to fade. My eyes became less itchy on Thursday, and today (Friday) I think I feel my lips becoming less chapped. I want to say that the numbness in my feet has also faded a tiny bit. But I am unsure whether that’s real or just my hope playing tricks on me. One thing for sure: all the sores and rashes around my central port are healing. That’s very nice.

On the other hand, I also have a new symptom: a splotchy, itchy, red rash on my neck, shoulders, and upper back. It feels a lot like minor sunburn: itchy all the time and sore to the touch. At first I figured it was actual sunburn despite the cloudy weather: I have a couple medications that increase sun sensitivity. After seeing a picture of it I think I’ll call it in to the clinic just to be safe.

My sleep cycles have still been super-wack, so this week has ironically had quite a bit less uptime—where I’m actually doing things instead of resting—than last week.

The really good news about remission is that I will likely never again have seven-days-a-week chemo. My side-effect profile will never be as harsh as it has been so far, because my body will have at least two days to recover after any five days of infusions and/or pills.

Looking back, it’s funny that I thought I might be returning to work by the end of February. I guess I really expected the arsenic trioxide and ATRA combination to be a lot friendlier to me than it turned out to be. I also didn’t anticipate being so cautious for so long about keeping out the infections.

That’s a wrap for this update. I look forward to the weekend, and to getting myself back into the swing of things in the coming weeks.

Cheers and hugs,


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