Isolation Day #6, another day in paradise. But the end is in sight for me. Dr. Fedorenko feels that I should be out on Friday, so perhaps down to my final couple days of solitary confinement.
Last night wasn’t a bad night for me at all. I only had one bought of night sweats and that subsided pretty quickly, took my pee break then, and slept through the rest of the night. Can’t complain, I ditched my gigantic top and was sleeping in a bra, so that helped too I’m guessing. But for the first time in a few days I did not wake up a complete sweaty disgusting mess, and my bandage stayed nice, dry and clean as well, score one for me! Will that happen again tonight, probably not, but I’ll take what I can get when I can get it.
My day started out slightly earlier than normal, got up around 4:30am, but I did sleep pretty amazing, so it was all good. I got started on my coloring at that time after eating a protein bar and cereal bar. Back to the fact, what do you do in isolation so early in the morning when you are just killing time till the first batch of interruptions for the day. I mean I could read or watch a movie, but I prefer to be more active after waking up, so coloring it is, not like I can take a morning stroll.
6:20am on the dot, in came my nurse to do my blood pressure and temp check, all perfect there. This nurse was dedicated today, she waited till my thermometer beeped, she was obviously bored… Most people here don’t tend to like this particular nurse, not sure on her name, but she always wears her trademark bright blue eyeliner, but I don’t have an issue with her, she smiles at me, and we seem to have hit it off. Being friendly pays off I guess, she doesn’t speak any English at all however. Shortly after that she was back to do my daily blood draw and hook me up to my infusion. My blood draw line was a bit more uncooperative today and took a couple attempts before she managed to get up some blood, but she then hooked up the steroid infusion to the same line, so it got good and flushed out with that.
Slow morning, just spent time coloring waiting for my room cleaning. I hate to break out my cross-stitching before that happens, it’s a pain to put away, so coloring it was for a bit. Finished one picture and started another, then gave up and just laid down and relaxed for a bit.
Breakfast #1 showed up around 8:45am today, was some odd type of thick oatmeal sludge that really wasn’t edible for me, bread, a hard-boiled egg, tea, and sugar. I ditched the oatmeal, made up some garlic bread and called it a meal. Had a protein drink, ate a bit more of my own food and called it good. Breakfast #2 came around 11:45am. It was the usual 2 cooked apples, hunk of beef, baby yogurt, and the notorious plum tea mixture, that I actually think was some type of broth again today, not sure, didn’t touch it. Made myself some coffee instead.
Around 10:20am I had my daily Dr. Fedorenko meeting. I figured he’d be later today, since 2 patients here were getting stem cells collected today, so that slows things down for everyone else, since he’s always hopping in and checking on them. But he was pretty much on time today. He did the normal vitals, all were good, then we got down to business. The paper comes out and he writes down the numbers for the day. My Leukocytes are up to 0.15 today so they are on the rise, he was very happy about that. He thinks they will really jump tomorrow and is optimistic that I will be out of Isolation on Friday, be weaned off my steroids over the weekend, get the final Rituximab infusion on Sunday, then get my neck line pulled that same night! If I get out of Isolation on Saturday that all gets pushed back a day, but it’s all good. He’s happy, I’m happy, the new immune system is starting to take off, it’s a good day. Platelet counts dropped a bit, but still way about transfusion range so he doesn’t have any issues with that at all. The other 2 ladies who had platelet transfusions yesterday upped their numbers enough, so they didn’t need another one today, hooray for them!
Room cleaning was late again today, but I was the first room hit today, so I lucked out. Happened around 12:30pm. This gal could care less about wanting to scrub me down, so off I went to the bathroom with my new clothes and towels. Took a quick shower, did my alcohol bath, got dressed in my new judo duds and off to the bed to sit and wait for her to finish the cleaning process. My hair is starting to fall out now, was getting a fair bit off my head during the alcohol scrubbing, exciting. Tomorrow looks promising in the hair loss department. Another gal who just finished up here offered some tips on how to speed up the process, will be trying that tomorrow and if successful, will post about it.
1:00pm exactly my nurse was back to do blood pressure and temp check. Still all good there, really no change at all, stays in the proper range. Then around 2:35pm in she came again to do my stimulation shot and afternoon steroid infusion. Now this is the nurse most don’t like, but we seem to have a bond, so I have no issues with her. She wastes no time, and jabbed me in my right arm, she adds some variety to my shots, everyone else does my other arm, kinda nice really to get some variation. Then she hooked me up to my drip and was off. Boy she had it dripping fast today, I was done with that infusion in no time flat, in fact I had to lay down and rest a bit after that one, that’s a lot of steroids to take in so quickly. But a far quicker and less exciting experience than yesterday with my nurse trainee.
So now let’s discuss food. Lunch gets its own feature today because it’s Wednesday, and Wednesday for lunch is OX TONGUE day. The day of the week so many despise, but I don’t mind at all. So lunch showed up around 1:40pm, I already knew what was coming, so it wasn’t a shock. It’s actually a pretty big lunch you get on Wednesday. You get a chunk of tongue, mashed potatoes, bowl of fish soup, and bread. So if you forego eating the tongue, you do still have options to eat that are filling. I still ate everything. My piece of tongue today was the best piece I’ve gotten so far since I’ve been here. It really was perfect in every way that a piece of tongue could be, it’ll be my final meal of tongue here so I have to cherish it. Cooked nicely, tender, no blemishes or hard spots, I managed to eat almost the whole thing, except for a bit of hard skin on the end. Nice meal really. More people should try the tongue, it is an expensive cut of meat in the USA and considered a delicacy. Some pics of lunch and me with my tongue. This is what isolation does to you…..
My afternoon was pretty boring really. I spent my time rocking out to Rammstein and cross-stitching, my normal routine. Dr. F did his afternoon rounds fairly late this afternoon around 4:30pm, and was pretty quick with it today. We did the normal discussion, handshake, and he was on his way. But 2 Russian patients had their stem cells re-infused today, so they had their stemmie birthday party and that’s a huge deal, so more time was focused on them for the day. I’m cool with that. The birthday parties are the most important part of being here and it’s great how much Dr. F himself participates in them and does the speech, does the pins. Incredible thing really. I got to partake a bit in the festivities when some of the liquid nitrogen plume came under my door when they threw it down the hallway. When in isolation, it’s the simple things that entertain you. I mean I got liquid nitrogen in my room 2 days in a row, crazy.
6:00pm was dinner. Dinner is never good on tongue days…. I mean one day I lucked out and got tongue a second time, obviously they had leftovers that day. But typically it is breakfast for dinner, not a good meal. It was a really thick oatmeal slop, raisin cream square, bread, cookies, and tea. Not many people opt to eat this meal and this is when it’s good to have some back-up food supplies. I didn’t eat the oatmeal at all, it went in the toilet. But I made myself an interesting mix of food to go along with my raisin cream square. I went with instant mac and cheese, a can of peaches, and 2 pieces of garlic bread. Not the healthiest, but it works, then I had my second protein drink of the day with it. I do my best with trying to eat all the food they serve here, but with some of the breakfast type slops I just cannot stomach it. So a pic of dinner and then what I actually ate.
My evening finished up around 7:40pm with a nurse coming into to take blood pressure and temps, all good there. Not sure on this nurse’s name either, but she is one that no matter what you do, you just cannot get any emotion out of her. I refer to her as the Halloween Owl nurse, since every time I see her, her scrub top is an owl themed Halloween print, never changes, must be her favorite pattern. She always gets annoyed with my thermometer and just yanks it out of my armpit and is on her way. Works for me. Dealing with that is the last interruption for the evening, then it’s peace and quiet.
My day in general wasn’t super exciting, just more relaxing. Improvements I’ve seen are the same as before. Side effects about the same, some hot flashes and sweats, not as intense as past days. A bit of bone pain in my arm. Really right now the thing that is killing me is the lack of being able to move. Being confined to a room, you can only move around so much and with a neckline in, it’s not like you can really do much physical activity. I do stretching several times daily and pace the room a bit, but still am struggling with that lack of movement. I’m a more active person, so being confined is rough on my body. So I do look forward to being out of isolation so at least for the first day I can at least roam the hallways a bit, usually on day 2 you are allowed to venture outside with a mask and I plan to roam the hospital grounds a fair bit that day, both to take in all the pretty flowers that are popping up everywhere and just the chance to actually move around. So that was my day, nothing super exciting today, just another day in isolation, hoping to be free soon. A closing shot of me for the day, with my awesome fan. Depending on the time of year you are here, you will also learn to love your fan, especially when dealing with hot flashes….
Onward to tomorrow and hopefully my numbers skyrocket and get me closer to freedom!