I was hoping to post more frequently, but I’ve found my free time has decreased significantly. We’ve been doing a little bit of traveling which I have been thrilled about, but I’m still reconciling that my mind and body just can’t handle as much as it used to.
Why Inpatient Chemo? As previously mentioned, inpatient chemo for Ewing’s sarcoma consists of 4-5 days in the hospital. This is because you need to be hooked up around the clock to a bag of fluid called mesna. This is to prevent the chemo drugs from damaging your bladder and kidneys. Additionally, it’s best to stay in the hospital for constant monitoring while undergoing this regimen. Several times my blood cell counts got too low and blood transfusions were needed.
What’s the Process? Inpatient chemo stays for me usually began on Tuesdays. I would first get tested for COVID-19 early in the morning. I could not be admitted if I tested positive. Thankfully, I’ve never had COVID.
Then it was on to bloodwork and making my port accessible (meaning poked with needles and hooked to the IV lines). These items were usually accomplished by 9:30am.
From that time, we would have to wait 1.5 to 2 hours for my lab results to come back and meet with the nurse to give me the go ahead for the chemo. This was such a crappy time. The waiting was so uncomfortable and mentally taxing. I didn’t want to be there but knew I had to be there. I usually dove in to a devotional book and spent the time praying, hard.
Once the lab results came back we would meet with the nurse and go over my numbers to get the all-clear for moving ahead with the chemo. My numbers were always “good enough” to move forward with each round. Yay.
After getting the thumbs up, we would wait for a bed at the Moffitt hospital to open up. Sometimes one would be available right away and sometimes we’d have to wait a couple of more hours.
Once a bed opened up, we’d head up and settle into the room. You should’ve seen the things Nelson would bring and set up for me. Because hospital lights are awful, he bought a small lamp with an LED bulb I could control from my phone. He’d bring pictures of family. Anything to make me the tiniest bit more comfortable. When I thought I could be productive during this time, he brought a big art easel so I could do paint-by-numbers. We soon realized the side effects of the drugs left me much more like a zombie than a functional human being.
Because a bed wouldn’t be open until 2 to 4pm, my chemo treatment wouldn’t start until 7 or 8pm each night. During my first stay, chemo didn’t begin until 9pm. I can not state how much it absolutely sucked.
Mesna for 24/7 and then etoposide and ifosfamide for one hour each every night. For five days. And every few hours a nurse or tech was in the room – taking vitals, taking blood, transfusing blood, giving me pills, giving me shots, checking my port, correcting the beeping machines, helping me to the restroom, etc. The physical exhaustion was expected, but the mental exhaustion was unreal.
How it Started vs How it Went. I wanted to treat it like a “vacation.” I wanted to pretend I was just locked up in a hotel room. But no positive frame of mind could be had. As each minute ticked on, it got worse and worse. By day three I’d just be laying in bed, crying.
Nelson would do all he could to keep me entertained. We’d walk the halls with my IV pumps and look at the weather out the windows. About halfway through treatment the only thing I could or “wanted” to do was play UNO for a few minutes. The rest of the time I laid in bed and cried and slept. My brain was mush.
Getting Discharged. I was discharged on Sundays. I couldn’t wait to get out of there. Sometimes we’d get out by 9am and sometimes it would be well past noon. It depended on the timing of the chemo and the mesna (and how quickly the nurse could put the papers through). Getting unhooked from the IV pump was the highlight of the day. Free at last! All I wanted to do was get home and get in my own bed until the next round. That was my refuge and place of peace.
But wait, there’s more. Because chemo is literally killing everything in your body, I’d be sent home with various drugs.
For the first six days after inpatient treatment, Nelson would have to give me pegfilgrastim shots. These shots are designed to stimulate white blood cell production. Chemo does a pretty good job of wiping out any immunity your body may have, so it’s important to get the white blood cell production to prevent any infections. Sometimes these shots worked and sometimes they didn’t (more on that later).
I was also armed with several options for nausea, diarrhea, and constipation. It is hard to predict how chemo will affect someone and it’s even more hard to predict how someone will feel cycle to cycle.
A special mouthwash was needed for mouth and throat sores.
Claritin was recommended for bone pain. The bone pain was more severe in the first couple of rounds. I can only describe it as growing pains, but worse.
So yeah, that about sums up some of the worst days of my life. But by the grace of God, I made it through. It definitely wasn’t because of my own strength and determination.
For those about to endure this chemo or who are going through it now: I do not write this to discourage you. I write this because I’m still here when I thought that I wouldn’t be. I write this to share the experience with doctors, researchers, and caregivers.
As awful as this treatment was, it was necessary. And with each cycle, a little bit more hope and light appeared because the chemo was working.
Remember: it is TEMPORARY. When you’re in the midst of it, it can seem like life is over – like this is all you’ll know and you’ll never get out of bed again. And I write this to tell you that’s absolutely not true.