It’s snowing. Big, wet, white, “winter has arrived” flakes. While I know that this means that my life gets more challenging (think boots, ice, and cold hands that don’t work) it IS pretty, and snow makes everything feel ‘Christmasy’, don’t ya think?
My apologies for leaving you all wondering what has been going on over the past few weeks, but honestly, it’s been uneventful. I’ve got a little over two weeks left of the daily infusions of Ganciclovir. My infusions are down to once a day, and a smaller dose. Homecare taught us how to maintain my port, and change the bag on the infusion pump, so we’re pretty self-sufficient. The nurse only comes once a week to change my dressing.
The biggest news (!), is that I’ve reached the halfway point. Halfway to +100 days, the milestone for the transplant doctors before which infection is most dangerous, and things going sideways are the biggest concern.
I’m feeling pretty good. My energy level is already better than it was before the transplant (!!!), so that’s a great sign. I haven’t noticed a change in my CIDP symptoms, but we’re not expecting to, this early.
Remember that the goal of the transplant was to STOP the progression of the disease. They’ve been very clear that they don’t EXPECT an improvement, and if things do improve it will be several months (or years) from now. We stay hopeful. Right before the transplant, I had another little slide in my symptoms, and it means I lost the ability to write by hand, and the walker has become more of a necessity. Even typing is slower, and less comfortable than ever. So…we’ve all agreed that even if I can reverse those things, we’ll be ecstatic.
My appetite is pretty much back to normal, while I do still seem to be nauseous more than I would like. I’m not taking anything on an ongoing basis for nausea anymore, having just stopped the olanzapine a couple of days ago. I’m only taking pills four times a day now, instead of six!
I’m still bald(!) and waiting
impatiently to see signs of growth. I think it will definitely help my anxiety once it starts to grow, because right now I still LOOK sick and that is proving to be more stressful psychologically than I thought it would be, especially when leaving the house.
On that note, the hubs and I have been to a couple of matinees the past few weeks (when there is almost nobody there), and I have been shopping quickly, and at off peak times. I’ve been on many car rides, and started driving again (yay!) last week. I remain hyperaware of my surroundings and anxious about being around people, but I have been cleared to eat out again and so even had veggie, and cooked SUSHI after a movie last week! (small victories!)