My chemotherapy alternates each treatment, with odd-numbered treatments done out-patient at MSTI (Mountain States Tumor Institute) and even-numbered taking place over a 5-day in patient event. Going into my 2nd cycle of chemo, I didn’t know what to expect. I couldn’t find any adequate articles or blogs touching on what to expect when you have in-patient chemo. While each individual’s experience will vary, here’s what I experienced:
We arrived Thursday morning at the hospital registration around 7:30am. We were up on 4 South, chemotherapy inpatient wing, by 8am. We were shown to a room where I then waited. The nurse visited and got my port hooked up so they could run blood tests. The doctor came by to check in and make sure we were ready. Really, though, it seemed like we were sitting around waiting.
The hospital room was small and cluttered. I sat on the bed, while Kathy sat in one of the chairs. Neither of us really knew what to do. A nurse came by and wanted me to eat. This was Dorothy, she would prove to be one of my care-taking angels over the visit. (Along with Mary Kaye, Kim, Scottie, Christina, and others.) Never assigned as my nurse directly, she did check in on me whenever she was on duty. She had been the nurse that taught the “TLC” class Kathy and I attended. TLC is Treatment Learning Class. I call it Chemo Class.
After some scrambled eggs (it’s all about protein), we waited more. It was nearly 12noon before anything happened. We waited and worried, mostly because we had no idea what was supposed to happen next. This is the morning we realize the hard lesson that neither of us is good waiting for the unknown. I was weepy and worried. Dorothy popped in and knew we were having trouble keeping it together. She tried to cheer us, explained how the pharmacy works differently here than at out-patient MSTI (hence the waiting), and promised to do her best to get me into a better room.
I had joked ahead of the treatment that I was going in for a 5-day spa treatment versus a 5-day confinement. The room was looking like confinement. Too dark, too small, my back was to the door if I was in the bed. This would not do for me at nights when staff are popping in to check on things. I was on edge and filled with anxiety.
Then it all changed.
Once the treatment got started, I felt better. Just knowing some action is taking place helps. Better was the knowledge that comes when the medication comes in the room. They told me how each day would work. It’s roughly:
- Early morning: Blood draw, they test red blood cells, while blood cells, and platelets daily.
- Mid morning: Daily medication, like my synthroid, an antacid (because chemo causes stomach acid), and an anti-coagulant (because chemo is rough on blood). The anti-coagulant is a shot…in the stomach. It only hurts for a few seconds, but learning about it was a shock.
- 12:30pm ish: Pre medications. These are anti-nausea meds and meds that protect the body (especially digestive system). One of these is the Mesna that I talked about with the first treatment – the horrible tasting stuff I’ll never drink again.
- 1:00pm: Chemo. My in-patient treatment is two bags. Each takes about an hour to drip. There’s usually a small break between.
- 5:00pm: More Mesna (it really does protect the body)
- 9:00pm: Final Mesna (it doesn’t taste bad when it’s done via IV)
- All the time: There’s saline dripping constantly. The idea is to flush out the toxins, so fluids are everything.
I learned that the chemo wasn’t 24-hours (the fluids are, and they are very, very important). This made me feel better. Having a schedule made me feel better.
During that first afternoon, I was upgraded to a bigger room. They have a few rooms for people who are here longer term. 5 days isn’t normally considered long term, but my anxiety that first day got me an upgrade. The bigger room had enough space for visitors to sit. We had 5 chairs at one point. It also has a small refrigerator, which was nice to store leftover food and some drinks. Best of all, the bigger room had big windows. So much light!!!
Since the move and once the treatment got going, my experience has been almost spa-like. No, there’s no one rubbing my feet, but there could be. I can get on a list for a visit from the massage therapist while I’m in patient. The nurses and CNAs (now called CAPs) will do anything to make sure I am comfortable and happy. They even brewed some iced tea for family that was visiting with me.
My first night, I got nauseous from the treatment. I had ordered dinner, but never ate it. Anti-nausea meds knocked me out and I was asleep before 8pm…probably earlier. Similar happened the second night, but not as bad. As soon as I noticed the feeling, I said something so we could nip it in the bud. My nausea related to chemo isn’t what I expected. Rather than my stomach acting up, it feels like motion sickness – it’s all up in my head.
A weird thing during treatment is that food tastes different. Right now, everything tastes bland. I just want flavor!!!! Spicy, hot, taste tastes! I asked my nurse on Saturday (Day 3) if I could have food from outside the hospital. I can. He said that, on this floor, if there’s something a patient wants to eat, they get it….test results and medical status permitting, of course. Kathy brought me a sub from Jimmy Johns (with hot peppers!!) and it was amazing. We were preparing for the 6pm nausea that happened the previous two days, so Kathy brought it up around 5pm. Perfect! No nausea!
On Sunday, Easter Sunday, (Day 4) family came to visit and we played cards around the bed. Flatten out the bed, throw a blanket over it, and raise it to card-table height, and you’ve got yourself a game! We ordered take-out pizza for dinner. Flavor! Taste! Spices! We’d had our traditional Easter Dinner the week before. It was fun and I remain immensely grateful for a family who will change up everything to make my treatment go more easily. I am truly, truly blessed.
I’m writing this on Day 5 of treatment. Rumor has it I can go home after the final Mesna tonight. I look forward to sleeping in my own bed – and without an IV – and taking a shower in my own shower. The staff here on 4 South are amazing and I, sort of, look forward to seeing them all again. But I’m ready to go home for the recovery part of Cycle #2. While this wasn’t the true spa experience I might have enjoyed, it wasn’t horrible. And it certainly wasn’t worth all the anxiety expended that first morning. It’s just been more sitting still than I prefer, and I’m a little more tired than I’d wish to be. I’m hoping that last bit will be remedied by my own bed.
In the end, I think we can get through this treatment.
You write so insightfully and intimately that I feel like I am right there going through it with you. I agree that you should put your blogs together into a book when this is over. I think so many, many people would gain in understanding and compassion for what you and others go through. However, I must confess that living vicariously through your blog is absolutely the closest I want to get to the real thing, thank you!
Gina and Kathy, I called the IV drip with its rolling device “the dog” which I dutifully walked a few times a day – it broke the monotony. Had I thought, I probably would have taken a dog dish, leash, and collar to the hospital for humor – even bad humor – is good. Hang in there girl, it’s all worth it!