Well, we wrapped up Round 4 on Friday…and it was a doozie. All in all, it went well, but this round seemed to hit me harder/faster than the previous rounds did. I started feeling crummy in the hospital, when normally I’m on Cloud 9.
I had some visitors, but I also had some time to rest. I struggled sleeping at night while I was there, but I made up for it during the day.
Something was a little weird with this round. It seemed like the pharmacy was over-filling the chemo bags. Normally, once I get checked in on Monday, I do the first bag of chemo, it takes a few hours, and then we move on to the 24 hour, around the clock drug for the next 4 days. Each bag takes rough 24 hours, give or take a little bit. However, this time, the first bag took a few hours longer. We didn’t think much of it…my nurse just added a little bit more time until the bag was empty. Once that was done, we started the first 24 hour bag–it started at about 5:30.
At the time, I was thinking, no biggie, we will catch up over the next few days. But then on Tuesday, when 5:30 rolled around, there was still quite a bit of medicine left in the bag. Hmph. The longer this takes, the later I’ll get out at the end of the week…
The bag finally finished at about 8:30. Fast forward to the Day 3, the bag didn’t finished until almost midnight. This was concerning for several reasons…first, was it safe for me to be getting all of this extra medicine? The nurses and doctors (and the rest of the world, for that matter) had mentioned how toxic and dangerous chemo is…was it okay for me to be getting so much more than the “normal” amount. Second, if the timing kept going like this, I wouldn’t be released until Saturday…boo!
So, I asked my nurse about the issue and told her my concerns. She absolutely agreed and said that something wasn’t right. She talked to the charge nurse and she thought that the bags were just being over filled. They weren’t necessarily putting in more medicine than normal…now it was just more diluted. She called the pharmacy asked them about it. They said they would look into it and get back with her…more than likely, it would be after her shift was over. However, she kept my new nurse in the loop and they were determined to get it figured out.
The next day, they heard from the pharmacist…and there wasn’t really a real answer. They did say that they appeared to be over-filling the bags, but they didn’t really give a reason as to why that was happening. I’m not sure how I felt about this. I feel like that’s kind of a big deal…
Anyhow, the nurses got permission from the hospitalist, my oncologist, and the pharmacist to speed up the rate at which the medication was being administered (that sounds real fancy…it’s not). Normally, for the 24 hour chemo, it’s set to go at 21.4 ml/h, which is SLOW…as molasses. Had we left it at this rate, I would have ended up going home Saturday evening. Now I’m not sure if you know me or not…but I’m a girl on a schedule. And my schedule said that I was checking out on Friday…this wasn’t going to work.
Fortunately, since it was taking so long and putting us so behind, we were able to speed it up to 30 ml/h…which is still slow…but at least it meant that I would be able to go home on Friday.
I got a surprise visit from the namesake of my amazing school. It meant so much to me that she would take the time out of her day to come and visit. She brought a beautiful prayer shawl that she had made at a local church. Mrs. Scott, you absolutely made my day! Thank you so much for coming to see me…I am so blessed to work at a school named after such an incredible educator.
At one point on Tuesday, the charge nurse as well as much day nurse rushed into my room to let me know that JCAHO was in the building and that they had a feeling they were going to be stopping in my room. JCAHO?! What?! How did I get so lucky! First of all, who in the heck is JCAHO? Second of all, why were they coming to see me?
The nurses explained that JCAHO is an organization that evaluates and accredits hospitals around the nation. They just so happened to be in the building that day and were going to be choosing some patient files to look through, etc. It seemed like it a pretty big deal for the hospital…I was hoping I wouldn’t screw it up. Nothin’ like a little pressure during chemo.
A little later that afternoon, a crowd of ladies walked in with clipboards…they were rather intimidating. After they exclaimed over the decorations, they started asking various questions about my condition, treatment, and details of my hospital stay. They started asking questions about the level of care I was receiving, how the nurses were doing, etc. [Cue the waterworks.] I started talking about the different nurses that I had, how thorough they were, and how blessed I felt to have them…and then the tears came. I felt silly, but I also felt that they could see it was coming from my heart and it was genuine. Most of the women in there eventually had tears in their eyes…whoops. I pray that in that moment, they realized that this was so much more than a “test”…I pray that they know what an impact the nurses have had on me. What a blessing they have been.
My nurse came back in a little later once the JCAHO team had moved on, and she was in tears. She went on to explain how much it meant to her that I gave such a genuine response when they talked to me. She said although we had only known each other for a day or so, she could tell that there was something was special about me. What a gem she was…I am so thankful for you, Lisa.
Fast forward to the end of the week…on Friday, once the 24 hour drug finishes up, I have to go one more called Cyclophosphamide. The last several rounds, I started getting a headache right about the time I started this medicine. I was sure it was a coincidence. It’s not. That darn medicine gives me a killer headache…it feels like a sinus headache. Behind my eyes and nose, it just burns. It feels like I went swimming and got a whole bunch of water up my nose. It’s quite pleasant. I just so happened to have the same nurse this Friday as I did the Friday of Round 3 and she remembered me getting the same headache. She gave me some heavy duty medicine that helped, fortunately. By the time the chemo was done and discharge papers were signed, my headache was gone. I was still feeling like crud, but at least my headache was gone.
I ended up getting discharged around 5:30. We headed to Chuy’s to get take out and then headed home. I felt pretty crummy for the remainder of the weekend. Hud ended up having a fever off and on, so he stayed at Amy’s until Monday night. Oh I couldn’t wait to love on that sweet boy!
Getting together and watching the Super Bowl is one of my favorite things to do, but I just wasn’t quite up for it this year. Even though we didn’t hang out with friends, my sweet friend Nicole made some Buffalo Chicken dip that she knows I love. I’m tellin’ you…these neighbors are something! Most of the day I felt like crap and just wanted to stay in bed. Harper and Danny played throughout the day while I took it easy. I asked Danny about printing some Prop Bets that we could do…I have always enjoyed these. We had a nice night home as a family (minus Hud) and I focused on feeling better. For the record, I beat Danny with the prop bets…I’m just sayin’, maybe I should go to Vegas. Anyone with me? I’ve never been.
Here are some pictures of the kiddos from the week…Amy and Jim, thank you so much for always taking such good care of them.
Monday morning I headed back in for the lumbar puncture. Everything went well and I started 24 hour bed rest when I got home. The bed rest is to make sure spinal fluid doesn’t leak and cause a spinal headache. I’m not quite sure what I’d do if I got a spinal headache at this point…thank the Lord none of those came around. They aren’t welcome here.
On Monday after the lumbar puncture, I went to the oncologist to get my blood drawn. Before they even got the numbers back, Dr. Stone’s nurse, Gennie, said that I was neutropenic–which essentially just means that my white blood count was extremely low. It’s pretty common after chemo treatments…nothing to be worried about.
So on Tuesday, once my bed rest was over, I drove myself to the doctor for a Neulasta injection. I wasn’t feeling horrible…my bones were just hurting…nothing that would stop me from driving. I got to the office, waited in line to check in, and then everything went nuts.
I got extremely lightheaded, really sweaty and then chilled, and felt like my legs couldn’t hold me up. Somehow, I was able to walk to the injection room to sign in and then went and sat down. I’m still not sure how I made it to the chair. A called Danny because I was so frustrated. Frustrated that I was feeling so crappy…frustrated with everything at that moment. He left work right then and came straight to the office. When the nurse came to call me back, I told her how I had been feeling, so she immediately sat me down and took my blood pressure. At first it was 93/63…then a few minutes later, it dropped to 89/54. This was really low for me. I’ve never had any issues with blood pressure, but since I’ve been diagnosed, it has been up and down…but never this low.
She got me some crackers and juice and they decided to give me fluids through my port. I didn’t feel fantastic when I was done…but I felt noticeably better than when I walked in.
I felt like I was improving once we got home. Nothing really sounded good to eat, so I had a protein shake…and I immediately felt sick to my stomach. I laid down for a bit and then began throwing up several times. Once I was able to stop, I laid back down and called it a night. In case you were wondering, I was still frustrated. I’ll get over it.
My precious nephews…their school decided to choose an Act of Kindness to celebrate the 100th day of school. They chose the Lymphoma and Leukemia Society. The children were asked to bring 100 pennies to donate. Greyson decided to #GiveMoore and brought 200. 🙂
Last but not least, another #TeamAshley picture.