Yeah… my mental function and ability to act rationally drops off. Actually it gets up and runs off screaming. Sure I could sneak food in the morning, but I feel like this isn’t fair to Jesse.
Jesse had radiation at 10am and labs at 8:15am. We headed down to CHKD at 6:30am.
Labs were drawn, and then we headed upstairs to head over for radiation. Her radiation oncologist was very pleased with her skin condition and lack of nausea. She wouldn’t stay still on the table so they gave her an extra dose of ketamine and verset. This caused her to take a little while to wake up in the PACU, but the nurse was really nice letting me come back before she was awake.
By 11:45am, we were back in clinic to meet with her doctor and see lab results. They were pretty busy, but by this time we were thinking feed me! I know this is the wrong thing to think about only us. There were others in clinic who were also probably waiting for different procedures were they couldn’t eat, but when the stomach is empty… rationality is empty too.
We met with our doctor who was not overly pleased that she lost weight (and he won’t be thrilled that I can’t get her to eat dinner tonight : ( ) Calories, calories, calories is what he kept stressing.
Her ANC is 632… so we are on neutraphenic precautions. Next week I am thinking she might need blood products even though her red cells and platelets are still really good.
We talked briefly about her upcoming antibody and accutane treatments. I asked about staying with her. Sometimes his lackadaisical attitude drives me nuts. “You can stay with her as long as we get the right people” said in the tone of why are you worried about it. Because if something goes wrong, I don’t want her to go through it alone. Then he needed to see another patient.
Don’t get me wrong. I really like our oncologist, but I am sure I drive him berserk with my need to plan ahead attitude. And I am sure that if I lived in his world, I wouldn’t have such a need to know ahead. There are times I would like to say to all these doctors and nurse, I constantly plan around your schedules… how about for once you plan around mine? My family’s life has been thrown into total chaos. We don’t get to come and go as we please because it’s not safe to be in public. All the activities we’d have normally done… we don’t do to protect Jesse. I feel like a shut in.
Luckily the nurse educator came along. She told me that I could stay with Jesse in the PICU. We will be admitted there to stay there for the approximate 4 days of each treatment.
They will give her morphine from the beginning because the antibody can cause nerve pain… if they wait until after they start treatment, they can’t catch the nerve pain. But once the treatment stops the pain will stop. Being that morphine reduces appetite… calories, calories, calories before hand.
She might swell a little, and she might experience flu like symptoms. She also might have a fever.
Infusions will take 10 or more hours. And occur in 5 rounds. The accutane will occur with these rounds, and for 1 round afterwards. Jesse will also receive a shot to increase her white blood count during this time.
I am sure that I will learn more as we go through each round.
By 1:25pm, I was fit to be tied. I know that our nurse was extremely busy, but I had a staff meeting at 1:30pm I needed to be present for. Plus Jesse and I needed food. I found her and said I have a staff meeting. I really need to get out of here. She was great. She’d been trying to get us together. And she quickly got us out the door.
I made my meeting via phone in time to watch this woman talk her way out of paying for parking. The deck were we park to access CHKD charges for parking. Luckily CHKD validates so that I don’t have to pay for parking. After the woman convenienced the lady to let her come back around, she drove off the lot, and through the MidTown Tunnel, stopping halfway through the tunnel.
Jesse and I arrived back home at 3pm to find that Christine had lied to grandma in order to get her hands on my video camera. Then as I was writing this they progressed to hitting each other with stockings. They are in there rooms ( I would say for the night, but Jesse slept from 2:30 to 5pm… which means she’ll stay up till around 11:30pm. Yeah.) I’m not going to down the whole bottle of rum, I’m not going to down the whole bottle of rum…