Last night was a rough one for me, not gonna lie. Got the last infusion of the night around 7:45pm and when the nurse hooked it in, she bumped my neck lines around and caused it to bleed a bit and caused more swelling. It wasn’t too bad at first, but as the night progressed it was really rather uncomfortable and made sleeping rather difficult. When I managed to get up around 5:00am this morning I noticed my pillow had some blood on it from where it was seeping out of my bandage. I had mentioned this to Dr. Nikolai when he did his rounds and he said that after my chemo drips they would change my bandage and give me a pain shot if I needed it. So not a whole lot of sleep happening last night.
Side effects from the chemo… Many people said the side effects happen at night. I haven’t encountered any thus far that are extreme. After the infusion itself I was a bit groggy and unsteady when walking and it did flare up some of my past MS symptoms. Everyone here seemed to be experiencing the same thing, so I’m guessing that’s common. During the infusions themselves you feel like you want to doze off, but then you have to pee, so it’s a vicious cycle. And then of course the peeing being the major side effect, you get so much stuff pumped in you, it’s gotta come out. And for me at least the chemo has made me so thirsty that I just want to drink tons of water, which equals more trips to the bathroom. My diet however has still been find. Food isn’t super appealing right now but I am forcing myself to eat as much as I can as well as drinking those god-awful protein drinks, ugh.
So my day today started off with Breakfast #1 at around 9:00am. Really wish they were back on the old breakfast schedule from about a year ago, would much rather get food earlier in the morning, but such is life. It was a cream of wheat type slurry along with a hard-boiled egg, bread, tea bag and copious quantities of sugar. Then the handful of pills. Usually I am so hungry when I wake up I end up eating one of the breakfast cereal bars I brought with me and occasionally a granola bar to hold me over till the actual food arrives. Seriously the breakfast cereal bars are lifesavers, I recommend bringing enough to have one for every day you are here. Breakfast #2 came during my chemo drip so I munched down on it while still getting infused, it’s usually the smaller meal of the day and about the same every day as well. The basic 2 cooked apples, chunk of beef, baby yogurt and plum tea. Pics of the meals.
Then on to day number 2 of chemotherapy. It started a bit later today, closer to 9:45am. Luckily today the batteries on the machine were charged so they didn’t have to be constantly plugged into the walls, much easier to deal with when having to maneuver to the bathroom. Unfortunately for me the battery on my top unit with my chemo bag died, so I ended up having to finish up with that one plugged in, but it’s all good. The chemo drip itself was a rather uneventful 3 hours, it makes you more groggy and sleepy, but yet it hard to doze off because you know you’ll need to get up and pee, a vicious cycle really. I killed the 3 hours by watching the Russia vs. Czech Republic hockey game on TV, Russia got slaughtered much like the USA did yesterday. Then I also like to relax by watching music videos on youtube. Some pics from my chemo today.
After the chemo was the exciting part of my day, I got to get my bandage changed on my neck line. As I mentioned above, the nurse last night bumped my line pretty good when giving my last infusion and made it bleed and swell and since it was seeping blood, they had to redo it all nice. It’s never a good sign when the nurse brings in a tray with all sorts of goodies on it and says much pain. Much pain, not good… Removing the old bandage wasn’t too bad, but in order to clean it really good she had to squirt it down with the alcohol spray, I think this stuff is straight alcohol, so I got numerous squirts of this right on my neck line, she wiped it all down, and then right before attaching the new bandages, she squirted a few more squirts on for good measure. That’ll sure wake you up!!! Much pain was correct. But she got it all wrapped up nicely and I much prefer how it is wrapped now, it’s much more streamlined and not as floppy. I think sleeping will be much easier with my new setup. Didn’t even need the pain injection since all the pain was alleviated by getting it attached to my neck better. Some before and after pics of my new neck setup.
After finishing up with all that, me and 2 of my fellow patients headed outside to wander the grounds for a bit. Getting fresh air and some sun is really helpful after the chemo. Plus it’s nice having people you can just chat with who understand exactly what you are going through both with the MS and with the treatment itself. If a person doesn’t have MS they really don’t have a clue what it is like dealing with it on a daily basis, even if you are a spouse or family member of someone who has MS you still don’t understand what it really does to the inside of your body, it’s such a hidden disease and certain things like fatigue are just something a regular person cannot understand. But we can vent and laugh and talk about the future and our lives back home, it’s nice. We’ve all embraced the experience and are trying to make it a fun time. Laughing and positivity are good.
I lucked out and when I was out walking around they cleaned my room so I didn’t get booted out for that, and lunch was waiting for me when I got back. Lunch consisted of some type of meatball, mashed potatoes, bread, and corn soup. An interesting combo but not bad.
The rest of the day has been pretty uneventful, mainly just laying around and resting. Another round of infusions at around 5:00pm and then another round again at 9:00pm. During my 5:00pm infusions I got the chance to do a video chat with my hubby and kiddos, was the first time I managed to actually do a video chat with my youngest. With the 9 hour time zone difference and hubby working, this was the first day it actually worked out that I could see her on the video chat, usually she is already in bed when they occur. Was a nice perk to the day. Dinner wasn’t super appealing to me, really have no appetite now. It was corn soup, raisen cream square, bread and cookies.
The effects of the chemo are starting to catch up to me now. I am more groggy and am battling some slight nausea and bloating. Not to the point I want to puke everywhere, but just really have no desire to eat much of anything. Plus my previous MS symptoms are flaring more now. More leg and arm weakness,hand numbness, and some burning sensations in my feet. I’m just going to spend the rest of my evening lying around doing nothing and try to rest. My last infusion is supposed to show up around 9:00pm and after that I’m going to attempt to take a sleeping pill and get some sleep. Day 3 of chemo is tomorrow, halfway done with this section of treatment!