Things are getting serious now
I’ve been in the hospital a few days now. My doctor considered letting me go home for the weekend since we weren’t able to start my chemo right away but he decided to keep me here since my blood values are way out of sync and I have small children at home which puts me at risk for illness and infection. They have started me on prophylactic anti-virals, antibiotics and anti-fungals. They draw my blood every morning and every night and I am given medicine to adjust my blood numbers into balance. I have needed phosphorus blockers, magnesium and potassium supplements. I have also been given a transfusion of platelets and a blood transfusion. Some of this goes in via IV and some are in the form of giant pills that I have to swallow.
One thing of note about this hospital is that everyone is very nice. Everyone from the doctors to the nurses to the lady who cleans my room. It’s like they all are trained to be encouraging and friendly and helpful in every way. They take care of all my needs but also offer my guests drinks or snacks when they come in. As a person who is not naturally nice to strangers I find this a bit jarring. They have a low patient to nurse ratio so the nurses are able to sit down and hang out to answer questions and make sure I am okay. Two doctors come in together daily. They both are leukemia specialists but one is an attending and the other is a fellow.
So coming to the 10th floor on the day I was admitted I was greeted by my primary nurse. Several people tried to find a vein for an IV but since I have right arm restrictions due to sentinel node biopsy my left arm was worn out. Once a doctor approved using my right arm they were able to place the IV there. I was scheduled for the next day to get a central line put in so this IV was just temporary.
The next couple of days were a confusing mix of doctors and procedures. I had a bone marrow biopsy to confirm diagnosis. I also agreed to let them pull extra aspirate to send to Amsterdam for a clinical study. The procedure effing sucked. There’s no way around it. Jeffrey conveniently left to go get lunch when they came in. I excused him since I didnt think it would help if the nurses had to stop to pick him up off the floor. It was done in my room by the nurse practitioner. They all told me it wasn’t really that bad and I didnt need to be afraid but it was bad. I laid on my stomach on the bed and a needle went in to numb the area. I could feel the needle poking around on my hip bone. After a moment they went in with the big needle and a big syringe. I was told all I would feel was pressure and pushing but she hit a nerve. I screamed as I felt a lightning bolt go down my leg. The procedure finished up with her using a different instrument to chip a small piece of bone out of the middle of my hip for a biopsy. There were small flashes of searing pain as she worked her way through the procedure. Thankfully it didn’t last long.
I was supposed to get a central line put in that day but I was bumped for more needier patients. I was put on the list for Friday. I couldn’t eat or drink anything before and they also removed my IV. It was midday before the nurses called to see why I wasn’t in yet. Apparently the surgery staff was waiting for a pregnancy test. The nurses drew blood for the test and sent it to the lab. Once that went through surgery came to get me. By this time I had developed a migraine and was given massive amounts of oxycodone and Ativan. My doctors came in at the same time to give me my formal diagnosis. I was way out of it and don’t remember but thankfully Jeffrey was there. I got down to surgery and I heard a comment about how I was already given something and was loopy. Of course, that didn’t stop me from flirting with the surgeon. He was carefully folding my gown down to modestly cover my chest so he could place the line. I told him that wasn’t necessary and he was welcome to take a look because the boobs were brand new.
Since I went in with a migraine I came out feeling much better. And the line has made it much easier for all my blood draws and medication. This weekend has been relaxing. They are constantly adjusting my meds according to my blood levels. I actually feel better now than I did the days I was home before coming in. They come in with good news about my labs and I always make a lame joke about getting to go home.
I’ve been able to go for walks outside and today I was actually unhooked from the IV for a full hour. I’ve had lots of visitors which is much appreciated. I have accumulated plenty of snacks and the kids go directly for the snack shelf when they come in. I got to keep the good TV and friends have brought movies. We are trying to keep things stable and consistent for the kids so Jeffrey is going home in the evenings to put them to bed but that means he can’t be here. A couple friends have been here to hang out every night so I’m not alone. I have warned everyone that things could get ugly once the chemo starts so we’ll see who is able to handle it.
Tomorrow we hope to get chemo started. We are waiting for approval to out me on a clinical trial. More about that later.