These homecomings are great. The interesting thing is that every time I come home, even though I am extremely happy to be here, there is always a bit of apprehension about being away from the "safety" of the hospital. Maybe it has to do with the switching of routines, the increase in activity, or maybe it is all in my head. Perhaps it's a combination. I am not sure if others with extended hospital stays experience the same thing when they adjust to being home.
Especially for the first few days, I have moments of only what I can call anxiety. If I manage to keep myself occupied, it is less frequent. A lot of times I just feel strange, discomfort in my muscles, a little extra shaky or maybe I can tell my heart is racing, even when resting. It bothered me a lot after my first few times leaving the hospital, but I know it will generally pass quickly now. If it doesn't I generally take a shower\bath which seems to help a lot.
During this adjustment period, I also tend to be sensitive to the chaos that occasionally happens at home (4 kids, 2 dogs, me and only 1 Andy to take care of them all). I find myself sensitive to loudness, unable to focus on multiple things and it takes longer to switch tasks. All this is quite unusual for a multi-tasker like myself. The other issue is that at the moment, I think most would look at me and say that they would not even know I was dealing with AML again. So it becomes pretty easy for others to forget that there is still a significant amount of recovery to happen. It's especially difficult for the kids. The biggest issue is how much strength I have lost and how quickly I tire. I can generally handle a day's activity but in short bursts. Longer if I can manage activities off my feet. Ex: cooking for Thanksgiving this year.
I think other often worry about getting sick at home. It's a concern, I guess, but I generally don't worry much about getting sick from my kids or from going out. Perhaps I should, but we've done this for 2 years and other then a little head cold here and there, I have not really had issues. To be honest I am not really all the careful about it either. I know others who are much more careful, who have had more issues.
This time is a little different. Remember my absolute neutrophil count (ANC), usually is at 500 before I get out of the hospital. This relates to my immune system and ability to fight infection. 1500 is the point where you can generally fight off infections on your own. When I left on Tuesday, mine was at 12. (Not 1200, just 12).
So in 1 microliter (1 cubic millimeter), a normal person will have 5-6 million cells. Most of those are red blood cells. In that same microliter, a normal person should have 4,000 - 11,000 white blood cells and 150,000 - 400,000 platelets. As of Friday, 1 microliter of my blood had 200 white blood cells, 88,000 platelets and an ANC of 78. White blood count and ANC are directly related. So...In a sample that is normally over 5 million cells they could only find 78 cells that I need to fight infection.
So back to the point... I am a little more careful at the moment. I didn't go out shopping with the old man on Friday (Black Friday). It would have been just to easy to catch something with that many people out, and I would have needed to sit frequently. Other then going out for daily labs, I will probably avoid most crowds until my count is above 500. I will not return to work until I find out from Mayo what my treatment plan will be. That will take a few weeks yet since I still haven't technically recovered from my chemo this round.
I am still adjusting at home. Thursday (Thanksgiving) was a big, wonderful day. Days will be quiet this week (I am home alone), evenings very busy. We'll see where my counts are in the morning. That will dictate how involved I will be with everything.
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