Chemo: Outpatient Treatment for Ewing's Sarcoma
One day of outpatient chemo alternated with the four to five days of inpatient chemo for my treatment. Initially the outpatient gig sounded like a piece of cake! But why, oh why is cancer treatment anything but?
What’s the Process?
My outpatient chemo took place on Tuesdays. The day began much like that of going in for inpatient treatment - bloodwork, accessing my port, waiting for lab results, and meeting with a nurse to go over the numbers.
My numbers were always “good enough” to move forward. Yay?
After getting the thumbs up, we would transition to the outpatient chemo center at Moffitt. This was another waiting period to get checked in and to let the pharmacy know to get my “killer liquids” ready. The chemo is formulated specifically for you. God bless the pharmacists. It cannot be easy mixing these poisons. Enough to kill what it needs to kill and yet not enough to kill the patient.
Once a chair opened up, they brought me back and gave me my pre-meds. Pre-meds protect the body from the chemo doing its worst. This also included an IV of mesna to protect other organs from damage. Then the three chemo drugs for my treatment were administered.
How it Started vs How it Went.
Three medications that, in theory, add up to just 2.25 hours of IV time, would often take 12 hours of my life. A blood work time of 9am would often see me not leaving Moffitt until 9pm. I’d see other patients come and go several times over.
I won’t forget my hope and positive attitude I had going into my first outpatient session. I remember listening to music and even getting up and dancing to stretch my muscles, and I remember being the only one left in the center that night.
I remember the bright red color of the doxorubicin (aka Red Devil) as it entered the IV. It also turns your urine red. You'd think they could put food coloring in it so the color wouldn't be so alarming. The second chemo drug was vincristine and it was my least favorite. It would always cause severe sinus pressure. The nurses would say to let them know if anything becomes uncomfortable and so I alerted the nurse of the pain I was having. She immediately paused the flow and the pain subsided. Unfortunately this meant that they would give me the dosage over a longer period of time, extending my stay in the chair for another hour. I believe that Nelson was only able to sit with me for one of my outpatient sessions due to COVID policies. Unfortunately my chair locations, time of day, and length of chemo did not allow me to make any other chair friends and I spent a lot of time just sitting there feeling sorry for myself. Sometimes my mind was well enough to pour over Bible verses or text friends and family. I could never get comfortable enough to nap. It was very lonely.
By my third outpatient chemo session I was being wheeled out in a wheelchair. I had stood up to leave and almost fainted in front of the nurses station.
I began to sob as three nurses held me up and another ran to get snacks, water, and a wheelchair. One of them asked me how many chemo cycles I had done. I told her six and her care grew even deeper.
If the inpatient chemo hadn’t gotten me the week before, the outpatient came along and finished me off.
But Wait, There’s More.
Similar to inpatient, I would be sent home with medications to assist my body in rebuilding the good of what had been killed off.
Although instead of the pegfilgrastim shots, a nurse would tack on a device that would inject a white blood cell stimulator. Some of you may know it as a Neulasta device. This device gets adhered somewhere on your body (I had it placed on my tummy) and 24 hours later and tiny needle pops out to prick you and deliver the dose.
It Seems So Unreal Now.
Typing the words “lonely” and “sob” brought back a lot of emotions. Emotions that I didn’t feel at the time because I found myself feeling nothing. Past despair, past depression. Just, nothing.
The only thing I wanted during this time was to be home, in bed, sleeping. "Put under" so I didn't have to experience it.
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, the tumor was shrinking.
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.
