MY NEW NORMS

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.

Bruised Hand

-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.

Turkey Dinner

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.

MOM’S VISIT & THE DIAGNOSIS 9.4.13

My mom decided to come visit and checkout my new house just after school started. It was when she realized that things just weren’t right. I spent the first 2 days that she was here with me on the couch throwing up, diarrhea, no energy or appetite. I almost passed out walking Ava to school and that is when my mom insisted that we go to Quick Care. They gave me a liter of fluids and sent me on my way – saying I was deydrated. It helped but not much.

The next morning my mom insisted we go to the hospital, I still wasn’t feeling much better. That was Wed, Sept 4. I haven’t left the hospital since then. I spent the next few days going through a badgery of tests. Anything you can think of: x-rays, CT scans, MRIs, continual blood draws. The blood draws confirmed that I had extremely low white blood cell count and low platelets. (For example, a normal adult should have at least a WBC count of 1000, mine was at 300.) I didn’t sleep for 2 days straight. The bone marrow test (test from HELL) is what confirmed it all – I have Leukemia.

WHAT? LEUKEMIA?  I’m only 31 years ago with and 6 and 3 year old.

I haven’t been home since that Wednesday. I will get on my high horse for one minute: be thankful for all that you have in your life, for your loved ones, make sure they know you care because you never know when there’s a day you won’t just be able to go home. I WILL survive – AML is completely treatable but your life can still just change in a heartbeat. Okay enough of that…

I have my husband and my mom living in my house to take care of the kids and keep the kids lives as normal as possible. I FaceTime with them every night and I miss loving squeezing their little bodies. They are hilarious in their bickering and their competitiveness about who has a better school. Some things just don’t change though. I still had to threaten to put Grady in time out (even though I am 2 miles away in a hospital bad. He shaped up!) In three weeks I will get to see them for a whole week. They have been making me pictures and masterpieces so I have a picture board in my room where they all get hung – even the neighbor kids have added to the Art Museum of Get Well Mommy.

Pic Wall