My treatment is what they call EPOCH – a combination of very nasty drugs that kill cancer (die you f*cker). Due to the nature of my chemo treatment, I am in the hospital for each round.
I will have 6 cycles of chemotherapy. Each cycle is 21 days. The first 5 days (96 hours of continuous IV infusion) of each cycle is spent in the hospital receiving the chemotherapy via infusion. My particular treatment requires constant monitoring.
Life in the hospital
I started my first chemotherapy treatment at 6pm. I have 4 chemo bags and each runs for 24 hours. Then I have a 30 minute bag at the end.
I have a private room. It is large but bland. The nurses are all very friendly and very patient with all my questions (and I ask a lot of questions). They are also really good about offering insights and letting me know what to expect.
There is a fairly constant level of activity in the halls and in my room. Nurses come to evaluate me every 4 hours – they take blood, check my PICC line to ensure it is flowing properly, take my vitals, ask me about pee and poop, talk about medications, symptoms, etc. Shift changes happen around 7am and 7pm. There is more activity then as the incoming and outgoing nurses handover and the new nurses introduce themselves.
Sleep in the hospital is fitful. The bed is not that comfortable and I have an IV line hooked to my left arm so finding a comfortable sleeping position is a little challenging. I have 2 IVs and each one has a pump that keeps everything flowing. Pumps also have alarms for a variety of reasons and mine went off a couple of times during the night. They also make an odd noise as part of their normal operation – a kind of squeezing plastic noise.
I have a lot of freedom of movement. I can get out of bed anytime, walk around, change where I am sitting. My main constraint is the IV pole I am attached to. The pumps are electric, so while I am stationary they are plugged in and when I move around I unplug them and they run on battery. And I am confined to the floor I am on.
I am an early riser – I have been for a very long time. My first morning I was up at 5:30am. This was in part due to a pump alarm and the timing of nurses checking on me. It is all good. I got up, went to the bathroom, and went for a little walk in the halls. The night charge nurse offered me coffee which I of course accepted. And then I sat in my room, reading email, news, writing, and generally chilling as I drank my coffee.
I think combatting boredom is the toughest challenge during the chemotherapy infusion itself. I do not feel bad at all. In fact, the cocktail of medications they have me on has me remarkably comfortable. Since I started this cycle with Rituxan, I feel pretty good. Everything I have read and everything everyone has told me is that it is the week after the chemotherapy infusion when you feel bad.
So Day 1 wasn’t bad.
Day 2 was busy. I had an ECHO procedure to make sure my heart was ok for the treatment. I had music therapy. A prayer with a member of the faith team. A consult with the aesthetician. And a morning of meetings for work.
I slept pretty well that night but woke up feeling really sticky and sweaty due to the hot flashes.
And then there was day 3. Day 3 was not a good day. It starts with me asking for a shower and being told no. just no, not going to happen. I cried. A lot. I was sweaty, sticky, uncomfortable, and most miserable. My doctor had told me I could take showers, and now a different doctor and nurses were saying no. And not just for one day for my entire 5 day stay. Yuck!
I pulled myself together, washed my hair in the sink, washed my face, wiped down with a shower towelette, put on clean leggings. I started working out how to solve this problem. 5 days is a really long time to go without a shower.
The aesthetician came back and gave me a facial. That was the perfect remedy. She smoothed away the past 6 weeks of worry and stress and turned my very bad day into a tolerable one.
I worked out that I would be able to change my shirt when they changed my chemo bag. I set out a clean shirt and made sure the nurse understood that I would be disconnected from everything long enough to change my shirt. Non-negotiable. There was a 20 minute break changing my chemo bag – more than enough time for a shower – just sayin’.
I was up really late on day 3 just feeling mad. I did finally sleep.
Day 4 (still chemo bag 3 for those counting) was better. The nurse made more effort to help me feel comfortable. We talked about options for showers and that timing would be the most important factor. And my doctor called me to answer one question and then asked how I was doing. I told her about the shower issue without any of my mad or drama. She asked if I wanted a shower today or if I could stay with what we have been doing for the rest of this hospital stay. And then she told me she would talk to the other doctor about this and make sure to put a note in my orders that says I get a shower. She said this would be fixed for the next cycle.
Physically I have been wiped out. Not just low energy, but no energy. I started to do a few things and ended up falling asleep. The nurse thinks the chemo is probably catching up with me. I think I am at the end of the uplift I get from the Rituxan too.
Day 5 in the hospital (still working on chemo bag 4) was uneventful. When you know you get to go home, you start counting down the hours.
The night nurse last night was my least favorite. She insisted on turning on all the lights and making sure I was fully awake every 4 hours to take my vitals. I do not like having my sleep interrupted under the best of circumstances. She got my grumpiest face. I am sure she thought she was being thorough. Mostly she was being annoying.
Chemo bag 4 finished right on schedule. There is one additional chemo drug they don’t mix with the rest but give at the end. It only takes 30-45 minutes to run. That one was interesting. IT runs really fast, so much so that you can hear the pump churning. I had a bit of a reaction. About 10 minutes before it finished I got a sudden and odd headache across the top of my scalp. The nurses stopped the pump, slowed it down, and gave me some Tylenol. Once this one was finished, the headache completely disappeared.
And then I got to go HOME!!!!
On Monday I returned to the hematology office for a shot of Neulasta to help boost my white cell count. And yes, this was an injection in my arm. They really can’t give up sticking me with needles. Honestly, anything to keep me strong so I can get through these treatments. Killing cancer to the focus.
1 down…5 to go.