Day 76 – 77 at St Jude

I really didn’t want to get up this morning. But Jesse needed to be at the Medicine Room by 9am to start chemo. This is the last day of treatment for Round 4. Jesse really didn’t want to be up either.

We arrived at 9am and the clinician promptly fetched us from the isolation doors. I figured we’d have to wait an unknown amount of time. She took Jesse’s vitals in the isolation room inside the Medical Room. Then she was gone.

Jesse and I waited, and waited, and waited. Finally about 10:30, I went out to ask if there was any rumor of who our nurse would be. I was a tad bit frustrated at this point. Jesse and I could have slept longer if I’d known we’d not be starting till almost 11am.

The nurse told me who was our nurse, and I returned to our room to continue waiting. He promptly came in afterwards. He apologized about the wait. He was trying to make sure he had everything on the protocol just right. I told him that was fine, I just wanted someone to come in and tell me what was going on.

Because of the phone calls to understand how the research team wanted labs drawn, computer glitches, other patients, and canceled labs; Jesse didn’t start chemo until 11:21. She will need a lab draw 1 hour after the antibody stops.

The nurse was really apologetic, and I am not angry with him. I just want to know what is going on. I am a little frustrated that we’d requested a 2 hour move up on chemo and antibody to have that not happen. But I understand that everyone needs to fully understand what is going on. And if we are figuring right on the traffic through here, they see many different protocols all with different needs.

After the temolozide, Jesse received the irinotecan. She then told me she’d had an accident. I cleaned her up. About 30 minutes later she had another one. I tried to give her the loperamide drug to prevent diarrhea, but in 5 minutes she threw it up.

She tried to eat peanuts, but those came up. The nurse came in with zofran and Benedryl for Jesse. This combined with the diluaded knocked her out. At 2:30, we were able to give her Tylenol and Ativan. Those have stayed down. At 3pm, we started the antibody. I gave her the loperamide again along with her neuronton.

At 6:50pm, Jesse’s antibody finished infusing. We had to wait an hour for the protocol labs. And then another hour before we could discontinue the basal rate of the diluadid. I wish they would cut her diluadid completely. Oxycodone is more effective for her pain afterwards.

It was 9pm, before we left. I gave her a eclipse of zofran. Around midnight, we zonked. I woke at 5am to give her her next zofran dose. Jesse had an accident in the bed because of all the fluids. I stripped the bed.

When the cleaning lady came, I asked her for sheets and everything to make the bed. She acted surprised that I was willing to make the bed. I told her I don’t mind. The weather is going to take a nose dive here today. I’d rather help her finish faster so she can get home before it gets too bad.

In fact with the weather report as it is, I called Mike to tell him that he should head to the airport to get on stand by. He was really lucky at the first airport. They put him on a plane to Charlotte no trouble. But in Charlotte, he has to wait until 5:10 ET to ask if he can get on the plane to Memphis. This is earliest flight he can get from Charlotte to Memphis. The next one is 8pm, and is the flight he is originally booked for.

Jesse herself has been up and down all day. Not sure how much the Ativan is playing with the mood swings, but she is eating a little. Fortunately what she is eating is staying down. We have to walk over to St Jude at 3pm for labs. Tomorrow her day will start at 10:30 and looks like we have appointments until almost 3pm. Mike will be undergoing the aphresis for his natural killer cells starting at 8:30am.

Currently in Memphis the weather is starting to change to icy rain. Mike is number 1 on standby in Charlotte… crossing my fingers. And because of the whether it is crazy at St Jude. Jesse and I ran over at 3pm for her labs. They are so backed up from people arriving now to beat the weather, they can’t even see straight. It was 35 minutes before they could come draw Jesse’s 1 teaspoon of blood for the protocol.

Thank you for the cards and well wishes Ann, Betty, Mom (and bracelet), Greg and Beverly (stickers and way to get herself a treat), Mariam and Sarah, Casar Baptist Church Prayer Group, Mt Pleasant Baptist Church Tuesday Morning Bible Study, Nancy, Carolyn, Candy (and stickers), Aunt Carolyn, Ruth, Faye, Uncle Jerry, Jenny, Roger, Jonnie, Ken, Jessie, Ricky, Howard, Ethel, and Margaret.