I know it’s been a few days since I have posted. Even my computer seems mad at me. It took awhile for it start working correctly. I’ll be honest. I just didn’t feel like being on the computer. I’ve been watching a lot of Food Network, the news and football and reading. Thankfully I have cable in my room. Its no Direct TV (which I miss dearly), but I’m not going to complain.
Today is Day 10 of being in hospital and I am certainly learning the ropes around here. I’ve been paying more attention to all the medications they are giving me and what they are for. Its empowering to know what is going on. But after 10 days, I have started to realize that I have a whole new set of norms that are settling down for me. There was such a big adjustment from only 10 days ago when I was at my own house, doing laundry, making meals, cleaning, (still unpacking), taking the kids to and from school to BAM! I’m at the hospital and I’m not leaving for a month.
My days are now filled with: (in no particular order)
-finding out who my nurse will be for the day (and/or night)
-getting my morning blood count and platelet numbers
-getting platelet and blood transfusions
-taking tiny cat naps but not being able to sleep at night
-having blood taken from me (thankfully I have a port-a-cath so they can now just take the blood from that instead of getting poked in the arm constantly. I’m still bruised up from blood draws and IVs.
-watching terrible daytime tv (I do make sure I try to catch Ellen. Most times I end up having the news or Judge Judy on in the background. It could make you go crazy.)
-FaceTiming with my kids (we usually Facetime after school and before they go to bed. Thank you Steve Jobs for this wonderful technology because without it, it would make things infinitely more difficult.)
-getting visits from my mom during the day and from Dave in the evenings after he is done working
-been doing a lot of reading (I’ve always been a big reader.)
-doing a lot of walking (I met a new friend who stopped by my room today who also has AML. She has been in here longer than me. She’s already shaved her head. I can’t wait to go walking with her tomorrow so I can get her insight and experiences.
-staying on top of my medications that help with a rash I’ve developed all over my stomach and sides, crazy gas pains and my constant headaches (all of these things are normal but they are still annoying). I told you once you’re in the hospital like this, you have no filter. I don’t have issues with sharing all these darn side effects. Watch out! As this goes along I could get more graphic!
-fighting fevers (I get extremely cold and shiver but my temperature will be 102 degrees. It usually breaks about an hour later where I break out into a huge sweat. This happens at least a couple times a day.)
-and then there’s the hospital food… I have much to say on this subject:
Most people are in the hospital for a day or two, maybe 3…I’ve been in here for 10 days and they expect me to be in here for at least 2-3 more weeks. Then I get to go home for a week. The reason I bring this up is because I am subject to all the hospital food on a daily basis. People make jokes about how bad hospital food is (kind of like airplane food back when they served meals in the olden days.) Well the jokes aren’t really jokes – the food is NOT good. I’ve watched enough Food Network, Master Chef, Chopped and Barefoot Contessa to make me an expert.
I have to admit breakfast is typically the best meal of the day. It is usually French toast with peaches and yogurt or some type of cereal (Cheerios, Rice Krispies) with yogurt and new obessesion canned peaches and pears and sometimes a hard-boiled egg. But really, how hard is it to mess up breakfast? Because of my low white blood cell count I can’t eat any fresh fruit or vegetables. I’m really missing them. This is called being neutropenic. Fresh fruit and veggies just have too high of a risk of bacteria being on them, even if they are washed properly.
Lunch and dinner are another story. I simply cannot eat any of their meat “products”. I can’t even be convinced that its meat. They aren’t edible. Typical lunches and dinners are roast turkey, pot roast, baked or honey Dijon chicken. I can’t even stomach them.
They don’t do bad with their pastas though – I can eat the lasagna and stuffed shells. I’m not saying it’s a 5-star Italian restaurant but I am able to eat it. Their sides aren’t so bad – typically it is mashed potatoes, sweet mashed potatoes or a broccoli and cauliflower medley. If you noticed, there is not a lot of variety. Thankfully my house is only 1 mile from the hospital and my mom likes to cook so most nights I get home cooked meals. I am very grateful for that. Or Dave picks me up pot roast from IHOP. Don’t laugh but I love pot roast and IHOP has the best in town, hands down. I feel so lucky that we have one within a mile of our house.
So moral of the story, be grateful and happy for the life you have now because it can change drastically in an INSTANT. And to be clear, I am grateful and happy that I am here. I’m still alive. That’s why I titled this “MY NEW NORMS”. I’m not complaining about things, its just I have a different kind of life right now.