Isolation Day #3 for me! Sometimes I work on these blogs throughout the day and post at night, sometimes I just write them in the evening, today I’m writing it in one shot before I head to bed. Overall today was a fantastic day for me in isolation. I’ve been loaded with energy and have an incredible appetite. Literally I have eaten everything that was brought to me today, including the non-appealing oatmeal this morning, finished off my tasty protein drinks, ate a can of beans I had here, several granola bars, breakfast cereal bar, and a protein bar. Steroids do this to me, but it’s a good thing, I’m feeding my new immune system.
The day started off pretty normal, I was up around 5:00am. Just couldn’t sleep anymore. Decided to start off the day working on some coloring, not much else I can do at that time as I knew the nurse would eventually be in for a blood draw, steroid infusion, blood pressure check, temp check, etc. They always say 7:00am, but it is usually always much earlier, especially since I’m in the end room and always get hit first. Then I knew eventually the cleaning lady would come and I’d have to put all my stuff away, so easiest to just color or do something simple in the morning before all that craziness ensues. So there I was rocking out to music on YouTube while coloring, yep I’m classy like that. I entertain the nurses anyways, they just never know what to think of my music choices since I’m always listening to something different whenever they show up.
6:15am on the dot my girl Olga was in to take my blood pressure and temp, all good there. Then at 6:30am she came in to draw my blood and hook me up to my steroid infusion. She’s always so cheerful in the morning, really the best nurse ever. I really want to take her home, she could teach the US nurses a few things. Only thing I think they could improve on here is the thermometers, think they need to invest in some of the snazzy forehead reader ones, would be much faster than sticking one in the armpit, maybe eventually they will upgrade.
After that I worked on my coloring for a bit. I am first on the cleaning line so assumed I’d be hit sometime in the morning hours and at 8:30am the cleaning gal showed up, tossed me my clean towels and clothes and shoved me off to the bathroom. A nice hot shower later with my old towel wrapped around my neck to keep my neck bandage dry and I was feeling ready to take on the day. Then I did my snazzy alcohol bath and got into my new clothes. Shirt actually was a bit smaller today, so not as baggy, pants still keep falling off though, but what can you do. At least you don’t see anyone so it doesn’t matter if your clothes keep falling off. Then when I was done in there, she cleaned my bathroom, and was off for the day.
By 8:40am Breakfast #1 showed up and I was ravenous. By this time I had already eaten a cereal breakfast bar, protein bar, granola bar, and drank a protein drink. I’m used to eating much earlier in the day at home, so I need food earlier than this. Today is was basic oatmeal, bread, baby yogurt, tea, and 4 sugar packets. For the love of god, the food gals will not stop giving me sugar packets no matter how many times I try to tell them no, my stockpile continues to grow….I’ll be working on building projects with them soon I think. Like always I’ll cover Breakfast #2 in this post as well. I felt a little ripped off today honestly, was back to the 2 cooked apples, was spoiled yesterday getting 3 of them. But along with that we also got a hunk of beef, hard-boiled egg, and plum tea. That didn’t satisfy me either so I opened a can of beans I had bought prior to isolation, heated them up and ate them too. Then downed my last tasty protein drink. Like I said steroids turn me into an animal, I’ll eat everything not nailed down….
Around 9:20am Dr. Fedorenko came in to do his normal daily routine. Take blood pressure, listen to breathing and heart, said all my vitals looked great. Then he gave me my numbers for the day. My Leukocyte counts are holding steady at 0.09 which is where they should be, he feels they will start rising more tomorrow, progress!!! My Platelet counts though took a hit, dropped almost 20 down to 54. All the ladies took a big hit today, so I’m guessing it’s normal at this stage of the game. Doc says I’m still in the safe zone and should be fine. If they drop below 20, then they will have to do a blood transfusion, but he doesn’t think that will be an option for me. Hopefully the other ladies can manage to bypass that as well, but if needed that is included with the whole procedure.
After that I broke out my cross-stitching project and made a fair bit of progress on it today. I was working on that and rocking out to a Rammstein concert on YouTube, yep I’m classy like that. Good times. Most people listen to relaxing music when crafting, not me, I need the hard stuff to keep me motivated.
Then 1:30pm rolled around and in the nurse came to do the blood pressure check, temp check, stimulation injection, and steroid infusion drip. They waste no time, I was doing all at the same time. But boy my steroid drip was slow today and took forever, thought it was never going to end. My girl Olga had gone for the day so I had a different nurse, this one you just can’t get to smile no matter how hard you try. She’s nice and helpful, but just not like my girl Olga.
Then before I discuss the rest of my day and progress, I’ll discuss the rest of the days meals. Not too bad really. Lunch came around 1:45pm and wasn’t too bad, it was a pasta dish which is a rarity here, it came with some chicken stew mixture on the side. I opted to mix it all together, really it was random chicken organs and chicken meat mixed in, I don’t mind organ meat so I downed it all, I opted to not tell the other gals what the meat was, didn’t want to horrify them, ha. And then it came with a side of a blended veggie soup and bread. I did manage to save my bread for dinner, but ate everything else. Dinner came early for me today at 5:15pm which was amazing because I was still a ravenous animal and wanted food NOW. It was white fish, mashed potatoes, bread, cookies, and tea. I pulled out my other piece of white bread from lunch and ate it for dinner. I have been making garlic bread in the microwave and it really is hitting the spot, I am needing the flavor and it works for me. I then proceeded to eat more granola bars as well. Don’t judge me, the new immune system needs to eat….The steroids just aid in that a bit.
The day finished off for me around 6:40pm with the nightly blood pressure and temp reading, all good. But now we can discuss the highlights of Day #3 in Isolation. So I have been loaded with energy today, I blame the steroids, they make me crazy. I have not been able to sit still all day. I colored, cross-stitched, colored, relaxed, stretched, colored some more, etc. I also have eaten more calories than most adult males consume, but ya know the new immune system needs to eat. People always ask with HSCT do you see any improvements, well I don’t really know how to answer that so early on, my goal is solely to halt disease progression, I could care less about improvements. All I know is that today for the first time in over a year my EYES HAVE WORKED NORMALLY TOGETHER!!!!! I have optic neuritis in both eyes, which they say isn’t super common, but lucky me have it in both. What I mean is that I had zero blurriness in either eye all day long and they completely worked together without either one spacing out. It’s really hard to describe and probably nobody has any idea what I’m talking about, but if you have optic neuritis, and it affects everyone differently, you may have experienced what I am talking about, and having eyes that cooperate together and actually see clearly is a damn amazing thing. Will it stick around, I have no idea, the steroids may be aiding in that as well. But having perfect vision for an entire day is a miracle in itself. I mean vision is something people take for granted, so being able to actually see normally again is amazing, really it is, even if it was just for a day, I’m happy. I also have not been battling the horrific floaters in my eyes that I deal with in bright lights, also a plus.
So that was my day. Not super exciting, but I did take a lot of time to actually reflect on my life, my future, and my family. I’ve realized there are those who actually care about me in my life, those who you would think would care but really don’t, and then just a lot of awesome friends that mean the world to me that have supported me through all of this. I couldn’t have done all this or gone through this without all the support, so thanks to all of you, it means the world to me.
And one last final picture of the most amazing thing ever, my fan. Seriously it’s wonderful, it ranks up their with Olga for amazing things here. I should have them pose together sometime. It is so powerful I have to face it towards the window so it doesn’t blow me away, but wow it keeps the room a nice temp.