I got out of the transplant unit Monday afternoon and returned to my parent's in NJ where I'll remain until I am cleared to go back to Alaska which will at least be until March 13th, 100 days from transplant. From the day of transplant, it took my white blood cells 13 days to recover to the point that I could leave. I was shooting for the record of 10 days but went over, mostly because the radiation burns were peaking right as my counts went to 0. The weight is still dropping (not sure why) and at this point I'm down about 20 lbs from when I went in. The last time I saw 163 was probably early in college.
In all, I think I fared pretty well as far as side effects experienced vs expected. There was nausea but no vomiting, no explosive diarrhea, not a hint of a mouth sore or pain. Just a lot of fatigue. The most discomfort came from the lack of sleep due to people constantly checking on me and the constant itching/burning of my radiation burns when they were at their peak.
Now that I'm out, everyone has all sorts of "what now?" questions. I'll see if I can address them here:
Q: Are you cured?
A: Can't say at this point. They do another PET scan 100 days after the transplant (3/13) to make sure there is no evidence of cancer. If there isn't, I think I can go home. If there is...there won't be. Even if there isn't any cancer, they don't consider you "cured" until you've gone 5 years without a relapse, which is still a concern for me given the nature of the cancer I had.
Q: Are you allowed out?
A: At this point, no. I'm restricted from public places so I'm pretty much on lock-down at my parent's until my blood counts get up to a certain level which I need to find out from my doctor. The estimates for when these levels will be reached vary greatly depending on the person but we're thinking at least 30 days of "house arrest". Could be longer but hopefully not.
Q: Can you have visitors?
A: Yes, as long as no one in the household is sick and no young children. They may not be sick but they tend to be "carriers" from school/day care. E-mail, call, or text me if you're thinking about stopping by and we'll see what the schedule looks like. I'll be here for awhile though so no need to rush, especially since I'm not real "dynamic" right now.
Q: How do you feel?
A: Totally run down but making the best of it. I'm not sure if it's all the chemo I got, the low blood counts, or some combination therein but it's going to take me awhile to get back to my normal physical self. How long...again it varies greatly but I'm going to push to get back in shape as hard as allowable. I'm already making a point of walking at least a mile a day but after that, nap is required. I'm eating fine and sleeping a lot to make up for all the sleep deprivation while in the transplant unit.