Part 12 ~ Chemo: Time

September 2016

My first chemo was 6 days after my port placement and the appointment was long. Kris went with me and I brought some things to do. I didn’t want to get bored and I wasn’t sure what I was up for. I had some crocheting, an adult coloring book and colored pencils, a snack and drink, a blanket and probably lots of other stuff I didn’t really need! My bag was heavy and a nurse remarked that it was as big as me!

The first day of chemo is usually a longer day than the others because they need to monitor you closely to see how you react to the different drugs as they are administering them. They start you off with some anti-nausea meds and a corticosteroid. My chemo regimen was FOLFOX which consisted of Oxaliplatin, Leucovorin, and 5FU (Fluorouracil). I was infused at my chemo center on a Wednesday and then sent home with a pump to infuse the rest of the chemo which would continue til around mid-day Friday and then I would go back and get disconnected from the pump.

It started off fine. I was talking to my husband, crocheting and trying to feel normal with this not so normal thing. Once they finished administering the Oxaliplatin, I got the strangest sensation in my jaw. I had been drinking something cold and it was like a jolt to the nerves in my mouth and jaw area. The Oxaliplatin makes you more sensitive to cold (be it a drink or air temperature). Anytime, for the first few days after chemo, I would experience this with the first few sips or bites of any food. I ended up having to drink everything at room temperature that was supposed to be cold. So, we let the water pitcher, and a bottle of ginger ale sit out on the counter during chemo. No ice cream for me!

They also have a saline IV hooked up to you while you are there to help flush the meds thru. I can’t remember how many times I got up to pee while I was there, but it was a lot! We went home with my pump all hooked up. I hated that thing! They send you home with a safety kit just in case it would become disconnected from your port or the machine (chemo will burn your skin if exposed). I was so careful not to have anything tugging on the line!

I laid around most of the time as the chemo was coursing thru my veins. The steroid kept me awake. It was hard to sleep at night or anytime due to the way the steroid affected me and because of the pump (you have to be really conscious of how you lay and roll over, etc. so you don’t catch the tubing).  I would lay on the couch with my eyes closed – not sleeping – just existing. Time felt like it wasn’t moving or at least not quickly. I didn’t feel like doing anything. I couldn’t read as I couldn’t focus on the words or watch much TV as it was too much motion for me. They had the same effect as motion sickness from a car. I felt horrible. I was nauseated. I lived on ginger ale, hot tea and ramen noodles and toaster waffles (my pregnancy diet during morning sickness!). I took ginger in any form I could get it – ale, candied, Gin-Gins, etc. as it really helped with the nausea. I did not do well with the Compazine they gave me! Once the worst was over, then the, er, well, we’ll just call it #2… started and that kept me busy for a few days in the loo… I had a week off in between treatments and finally started to feel better a few days before I had to go back in for more torture, I mean chemo, no, I mean torture! I just did not handle it well!

The Sunday after my first chemo, we had a picnic with our church at a lake. My husband dropped me off at the picnic pavilion so I wouldn’t have to walk as far. My Pastor came over to see how I was doing and I just broke down sobbing. I couldn’t even put words together. I was so spent from the ordeal that I just went thru as I was still recovering from everything else (abdominal surgery is a long recovery!). I just felt like crap! We had a pretty good day otherwise. I sat in the warm sun, surrounded by trees and caught up with my friends! Kris and Bean got to go kayaking on the lake!

After my 3^rd chemo, I was dropped off at home and I came in, got a snack, was talking with Bean and Mary and I felt ok for just having gotten chemo. All of a sudden, I got this tingling sensation that started at the top of my head and went to the bottom of my feet. In the middle of Mary and I talking, I stopped and told her that I felt dizzy, shaky, and weak. Something was wrong. Mary called the cancer center and we told them what was happening. We then called an ambulance (2^nd ride!). Turns out I may have had either a reaction to the steroid they gave me up front to help with the anti-nausea meds or some kind of anxiety attack or a combination of the two.

I felt that my chemo experience got continually worse as they were trying to tweak the drugs every week to provide me with the best experience. Symptoms, that I initially had, increased. I ended up needing IV hydration after every pump disconnect on Fridays as well as sometimes on Saturday and/or the following Monday. I was drinking as much as I could while the pump was connected to flush the chemo thru, but I just felt so sick that I needed a little extra help. I tried to keep myself busy during those appointments to help pass the time.

I was fortunate enough to have friends drive me, stay with me, and take me home from chemo. I had 4 cycles of it. I know that does not sound like a lot as there are many who suffer from cancer that have chemo for years. Some patients tolerate it well and some do not. Not everyone has surgery prior to their chemo and some do, which can also make this harder on the body.  

Once chemo was over, I found that I did not enjoy doing some of the activities I did at chemo. By doing so, it made me remember what was happening the last time I did them. But little by little, good memories replaced the bad. My Etsy shop, Stitching Remnants, was started in the fall before I got sick. I longed to get back to making things, but it took a while!

Time is a funny thing, isn’t it? It seems so long when we are going thru something. It can’t go fast enough when we are looking forward to something. It flies by when we are enjoying something. Yet, it is always constant! We hurry up and wait in this world we live in. But God has His own special timing. He knows what is up ahead, but we just can’t wait to get there. Sometimes we have to wait in a certain season of life because He is working things out for us. Maybe, He wants us to see, learn, or experience something that will change us for the better or that we will miss if we run ahead of Him and try to do things on our own. Check out Ecclesiastes 3:1 and just start reading from there…good stuff!