I slept later than I had meant to this morning. And I have discovered that if I want a workout and shower, I must be up by 6am. Because by 8am, I can just forget it. Good thing I shaved my head. No greasy hair and no bed head.
I am so over the in and out of people and nurses and doctors and volunteers. And from the look Jesse keeps cutting people, I think she is over it too.
I am also over the crappiness of this internet and my inability to connect without being kicked off after about 10 to 15 minutes. Occasionally I get 30 minutes. This is not helping my stress level because I have several things I need to get done for work.
Before 9am, a nurse and nurse in training came in to start the cyclo chemo. First they gave her zofran to help with nausea. Also got her weight 15.9 kilograms (1kg = 2.2lbs -> ~35lbs). Then they put on the cyclo. This ran for 30 minutes. While this was running, they were giving Jesse her medicine and removing her nephrostomy tube bandages. The spots look to be healing well.
By the time this was all done, it was time for the topetecan. Just as she got ready to put in on the pole, the needle in the syringe fell out. Luckily no medicine fell out. But this delayed everything by 45 minutes while we waited for pharmacy to refill the chemo.
While we were waiting, the Ethel research nurse stopped by. The nurse practitioner stopped by while Jesse was using the bathroom. I was trying to do situps when they stopped by.
Jesse was a tad unfriendly to all of them. I think I explained to the Ethel nurse that we’d had so many people in and out of the room that Jesse was over it. I am over it too. I am tired of people coming in the room and do the sappy sick sweet voice to Jesse. Talk to her normally please. And the guy that came whistling down the hall… well I am not being nice.
The antibody started about 11:30. The nurse in training came in, asked Jesse if she hurt anywhere, and for the first time today, Jesse tells her her neck hurts at a level 10. Bull hockey. If she was crying and not wanting to drink coffee, I would believe the level 10. I called Jesse on it. She claims that she is at an 8. I don’t believe that either. We got her laid in the bed.
The nurse got her an ice pack. Jesse started giving her trouble about where to place the ice pack. I looked right at Jesse: “You are not broke. Fix it where you want it yourself.” The nurse looked at me shocked. I am so tired of people babying her. They do not do me any favors. And they definitely don’t do her any favors.
After the nurse left, I had a talk with Jesse about her behavior today. I am over the whining and grouchiness. I feel grouchy too, but I am stuffing it down to do what needs to be done.
The 3 doctors stopped by to see how she was doing. She mentioned to them about her neck. They suggested to her to hit her button.
The room service lady brought Jesse a banana. She ate that down really quick. And now she is eating pretzels. I do think she has pain, but I think it’s maybe a 4. When her dad returned from the doctor checkup, Jesse put on her pouty face for him.
He got her an new ice pack for her neck before he left.
The cleaning lady came in next. I like her. She has her teeth so you can understand what she is saying. And she doesn’t smell funky. There is a lady that cleans for her on her days off that I can’t understand her and I am not sure what is mentally going on. I do know she hates my guts because I called her out for using water and mop in Jesse’s room when she was neutropenic. After she left, the room smelt like dead fish.
The nurse in training returned with new bandages for Jesse’s back. Jesse attempted to give her trouble over removing the band-aids. At the same time, the nurse practitioner returned to listen to her. All while I was on a webinar for work. I love how all these people have to show up when I am trying to work. And give me nasty looks because I am working. Excuse me for not sitting around on my butt.
Mike has gone to take my car to the body shop from where it was hit a few Sundays ago in the parking lot here. I really hope the insurance company isn’t going to give us crap. The woman on the phone yesterday for Progressive treated me like I was a first rate moron. I did call her back and leave a slightly nasty message. Like I have time to make crap up.
They are giving us a rental car to drive. We’ll see how this goes in getting that set up. Turns out that Enterprise didn’t have a car till later in the afternoon. After Mike returned here with my car, they called saying that they had a car. Then asked him to drive 35 minutes back to meet them. Mike got a little peeved. After finally working things out, Enterprise brought the car here. The body shop is coming in the morning to pick up my car.
A volunteer stopped by with the most annoying knock ever. Then child life came by. I guess everyone stopping by does make the day go by quicker, but you definitely don’t get any rest.
Jesse was feeling pretty punk this afternoon. Even complained that her leg was hurting. She asked me to go get the mail. The packages really perked up her up today.
Thank you Greenwood Christian Academy for the cards and stickers. Thank you Bright Beginnings for food, wands, and stuffed animals. Thank you Briar Rose and family for the stuffed animal, socks, purse, chap stick, princess, hair band, and books. Thank you Myron, Anne, Ella, and Ellis for the movie and coloring books.
Tomorrow Mike undergoes aphresis to get the natural killer cells for Jesse. I am not sure when they will put them in yet. I am hoping tomorrow they will let us know. And maybe if Jesse doesn’t run any fevers, we can stay at RMH.
I’ve tried to start this comment 6 different times, and even thought about just not saying anything because I didn’t know what to say. The amount of ‘stuff’ you are juggling is just mind-boggling. I so wish I could just beam you to a beach somewhere for an hour so you can just take a breath. Hugs to all of you, I hope the writing helps a little to deal with the frustration and worry and 16 other emotions you must be feeling. Think of you everyday and sending good energy to you.