Wednesday, November 23, 2011: Day 16 – There’s a lot of things I miss because of this stem cell transplant.
Driving: I haven’t driven a car since I drove to my first day of high dose chemo on Tuesday, November 1. I miss being able to drive. It’s okay that I’m not driving, but it feels like I’ve lost a bit of my freedom.
Fresh Foods: Neutropenia sure can throw a wrench in a person’s diet. No salads, no fresh foods, no fresh fruits or vegetables, no garnish on my food. It gets better. Leftovers can be refrigerated for 2-3 days, and then they are not safe for me to eat. Foods that are cooked and frozen are only safe for me for 30 days. I can’t add any spices to foods after cooking, except salt (thank goodness!). I can have cheese, but I can’t have aged, sharp, or moldy cheeses. Brie cheese is off limits. There is so much more. It is very complicated, and can be frustrating when planning meals trying to figure out what is safe for me and what is not.
Using a toilet: The first day of treatment, the nurse handed me a urinal and a piece of paper, and told me that from now on, we’re keeping track of everything that goes in and everything that comes out. It’s my homework. I have to turn the sheets in every day, so the nurses can make sure I’m getting enough liquid to take care of my kidneys, that I’m not holding water in my ankles or chest/lungs, that roughly the same amount is going in and out, and that my weight corresponds to ratio of ins vs. outs.
I got this back today. I decided that since I was feeling better, and that we totally lost track of my I/O when I was in the hospital (the nurses tracked it but I had no idea what it was. I just wrote it on the whiteboard on the bathroom door and they transcribed it.), that it wasn’t worth keeping up with. It’s so strange to be able to use a toilet like a normal human. I’ll have to get used to this.
Taking a shower: I can take showers, but I have to wrap my chest in plastic to keep my catheter waterproof so it does not get infected. The good news is that I’m supposed to have my catheter removed on Monday, Nov. 28, so hopefully I will be able to shower by middle of next week. I have to shower every day, and every day I have to use a fresh clean towel and washcloth.
Cooking and Cleaning: Who knew I would miss this! I’m not allowed to be in the kitchen when food is cooking, because I may react adversely to the smell. Also, we have to clean everything, all the time. Clean the house weekly, wiping down everything you would normally clean, and also wiping down door and window frames, picture frames, trim, baseboards, light fixtures, and anything else that can collect dust. This is a lot of work, and I’m not even allowed to do it. I can’t be in the house while cleaning is going on. If I am, I have to be in a separate room with the door closed and my mask on. I have to wear completely new outfits every day. Old outfits go in the laundry.
Wearing a mask: Anytime I’m outside, or out in public, or near people, or near dirt, etc, I have to wear my mask. When I’m walking outside and wearing my mask, my nose gets runny, and that’s just annoying. I will need to wear my mask for quite some time, either 3 or 6 months.
Feeling better: So, I feel a lot better right now, which is a good thing. I’m also really tired, but that’s to be expected. The danger is that even though I feel much better, it means I have to be even more careful to take all the same precautions as before, even though I feel like I can do more.
There’s a lot of other things I will miss, as far as being able to resume normal activities, but I won’t get into that now. Right now I’m just going to focus on feeling better, and that we are over halfway to Day 30!
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