Chemo: Inpatient Treatment for Ewing's Sarcoma
Inpatient chemo for Ewing’s sarcoma consists of 4-5ish 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, kidneys, and any other organs that could be affected.
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. Yikes.
Inpatient chemo stays usually began on Tuesdays. I would first get tested for COVID-19 first thing in the morning. I could not be admitted if I tested positive. Thankfully, I never had COVID during treatment. 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. We'd 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 into a devotional book and spent the time praying, hard.
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. That was fairly miserable too. Going through treatment is really just a bunch of waiting!
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.
God bless our oncology nurses. My favorite nurse was so kind and compassionate. She’s one of the very few people who literally saw me at my very worst. She saw the tears and the pain I was going through and she juggled me and so many other patients. She would do her best to ensure my chemo was being prepared on time. Disturbingly, nurses administering the chemo have to put on gowns and triple layer gloves because the drugs are incredibly toxic.
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.
I wanted to treat it like a “vacation.” I wanted to pretend I was just locked up in a hotel room. But with each day and with each treatment my mind and body got worse and worse. My brain was mush, speech slurred, and I had little interest in doing anything but sleeping. I’d get super nauseous and would throw up at the sight and smells of certain foods and from the anxiety of receiving that day’s chemo drugs.
It was around this time I began getting very depressed and generally just wanted to die.
By April, I was on several anti-anxiety and anti-depressant medications. But they didn’t do great at suppressing the thoughts of wanting it to end. Of wanting to pass away in my sleep. I thought I wasn’t being strong enough. I thought I was being a horrible cancer patient.
In reality, it was the chemo drugs distorting my brain. The chemicals were eating away at the cancer and every other piece of my body. 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.
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.
Because chemo is literally killing everything in your body, I’d be sent home with various drugs to combat the 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).
The shots were pretty scary. It's mostly the anticipation of the shot and trusting the person giving them to you. There were a couple instances where the shot misfired or the needle bent.
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, which worsened every time I went for chemo. 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. Most likely you're younger than me, tougher than me, and there's the possibility you won't encounter the side effects or the complications that I did! But if you do, yes, it's awful, but you will make it out the other side. You will see the light at the end of the tunnel. Not today, maybe not tomorrow, but it's coming. I promise.
