Operator: How may I help you?
Me: Hi, Yes, My nose is bleeding and I need pain medication.
Operator: So, would you like me to send your nurse?
Me: yes, please, that would be great.
My WBC count has not started to come up yet. It’s teetering between .1 and .2. This is all to be expected. Tomorrow (Thursday) will be the first day that they will start looking for counts to go up. I got a transfusion of platelets this morning because 4 is the lowest I’ve ever been. I had to have supervision for my shower because of risks with the low platelets.
I’m still having the mucositis in my mouth and throat. I’m off my isolation since my viral test was negative. They take it seriously because the guy next to me tested positive for the flu. I’ve been doing my oral care so it’s worse in my throat and esophagus. I have some acid reflux due to inflamed tissues all the way down to my stomach. I have Magic Mouthwash which is a combo of antibacterial, anti fungal and lidocaine. It is pink and tastes like a combo of Peptol Bismal and cough syrup and it make my mouth and throat numb for about 20 minutes. I’m also still getting oxycodone every 3 hours with a shot of IV Morphine for breakthrough pain. The doctor offered to put me on a Morphine clicker so I can control the dose all day. I don’t think we are there yet. I also have to deal with the side effect of itching from the opiates. I have to take Atarax as an antihistamine to help with itching.
Obviously, the pain makes eating and drinking difficult. I have Popsicles and ice cream. Today I had a little cup of beef vegetable soup. My nurse last night made me a milkshake with a shot of vodka in it except the vodka was really Ensure. I drank about a quarter of it. Carnation instant breakfast tastes better than Ensure. I am starting to get a little appetite back so when the mucositis clears maybe I can eat. The nutritionist came in to check me today. They get red flag alert for patients that don’t eat and come to the room to try to find something for us to eat. She told me that I’d do well if I could get down two Ensures a day. Yum!
The doctors are still waiting for me to get diarrhea and a fever. They ask me everyday. Pretty much no one gets out of here without fevering and having diarrhea.
I still have been meeting all of my goals. The eating could be better but I’m at least getting a little bit. I walked 10 laps around the unit last night and I get a shower everyday. I’m using a shower chair but that’s okay. It takes so much energy to do these normal things. There are so many steps involved with showering that I’m exhausted by the time I get to my full body rub down with Eucerin cream and put my fresh clothes on. Today I’m wearing a t-shirt and boxer shorts because Jeffrey has been taking care of a work emergency then a sick Amira and hasn’t been able to bring me my laundry. I suppose I could wear a hospital gown but they are so depressing. A friend is picking up and bringing me my laundry today. Jeffrey is taking Amira to the doctor because she has a lingering cough and fever from a cold. Once the family is well they can come visit me. I want so much to be home and to be able to take my daughter to the doctor. Jeffrey is fully capable and is doing an excellent job with the kids and keeping his time balanced but I just want to be there and take care of stuff for my family.
My card wall is growing steadily and the secretary makes comments about me being popular when she brings my mail. I love to read all my cards and then tape them to the wall. Most are hilarious and make me laugh. Some are sappy and make me cry but I decided that it’s good to cry. All of the cards are encouraging and I look forward to my blood counts going up and starting to talk about the possibility of going home.
Beautiful plaque sent to me from my friend in Colorado:
Life isn’t about waiting for the storm to pass it is about learning to dance in the rain.