Day 51 at St Jude

At 8am Jesse and I arrived at St Jude to wait on the medicine room to be ready for her. A little after 8:30, we were called back to get started.

The nurse came in with zofran and the telemorozide. This is the first time Jesse has taken a pill chemo. I stopped her from giving Jesse any zofran because I gave it to her at 7am this morning.

Jesse then took the two pills with water. For some reason asking her to drink the entire cup of water was like asking her to move a mountain. She did drink the water. I am concerned how this is going to get by Saturday.

The nurse practitioner stopped by to see how things are going and to ask about antibody for tomorrow. I asked her for diluadid and zantac. Jesse did so much better with diluadid last time. Instead of knowing that Jesse did that last time, she got stuck on wanting to give her morphine. I told her to talk with the attending from last antibody because she switched Jesse to diluadid.

We talked back and forth about it for a few minutes before it dawned on her that she was reading Jesse’s first antibody and not looking at her second one. Then she looked at Jesse commenting that I was keeping her and Jesse straight. I am so tired of having to deal with people treating me like I have shown up and checked out.

The nurse who did the chemo today was interesting. I am not sure what her deal was, but I am glad I am pre-medicating Jesse. She made some comment about her kids at one time that just was odd. Then she complained about on her day off not being able to be home because she had to go to the doctor. Complained about this to Jesse. Jesse hasn’t been home in 51 days. And if she has no guarantee once she gets home as to how long she’ll get to be there. We might get 2 years again… might get more…we are definitely praying for more.

I am guessing this woman had some serious illness at one point. She talked about a IV bag because we were leaving with IV fluids (Backpack Fred). And from the sounds of things, they might let me leave with Jesse on diluaded and IV fluid tomorrow. When the nurse practitioner called there was some comment she made about evaluating to see if we needed to be inpatient. I guess she is concerned about me being alone with Jesse.

I would rather try to keep Jesse at RMH if we can. First reason: she eats here. She doesn’t seem to care for anything in the cafeteria at St Jude. Second reason: We don’t have everyone seeing her all at the same time. Third reason: I don’t have to leave her by herself at all. I can take a shower with her sitting 25 feet from me. There, I have to leave her. And the last two times the nurse’s station has been down the hall from us.

Jesse mentioned food when we left the medicine room at 11am, but once we got it, she wasn’t interested. The good news is after complaining her stomach hurting at 3pm and getting zofran, she has eaten chick peas, yogurt, and pretzels. She has also used the bathroom several times and drank 2 cans of tea and 20oz of water.

At 12:30pm, the eye clinic saw her. This was a different optometrist. And her assessment of Jesse’s vision was worse than before. I asked her if the antibody could cause Jesse’s eyesight to worsen, but she didn’t know. She asked her colleague who had measured Jesse’s eyes before. He said it shouldn’t. They did say if her glasses didn’t seem to help, they could make adjustments to the prescription.

Fortunately at this point we were done at St Jude for the day. We headed out into the deluge of rain and back to RMH.

Tomorrow will be a long day of hanging out in the medicine room. I figure they won’t start her first chemo til 9 (though we’re there at 8). The second chemo will be at 10. The antibody will start at 11. If we are lucky, that will only take 4 hours. I am sure they will want to observe her for some time after the antibody stops.

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