FREEDOM!!!!!!!!! My Isolation ended this morning officially at 9:30am when Dr. Fedorenko came in to give me my numbers. He was early today, but I think he wanted to tell several of us the good news that we were done with Isolation and now in Mask Mode and that our new immune systems have started taking off. He gets very excited about this, I think he was almost more excited about it than I was, which really says a lot, I was pretty damn excited. He really gets into his work and I love him for that. But a super exciting day since now my brand new immune system is taking off and starting to do its thing. Leukocytes were at 1.38 so tripled from yesterday again. My platelet counts also massively jumped, also a good thing for recovery. Numbers should start going crazy over the next few days. From start to finish I spent a little under 7 days in Isolation from the time I went in to the time I came out, not too bad, the average seems to be around 8-10 days, most around 8. But technically I was on Day 8 when released, so I fit the norm. The two Norwegians here in my group also were granted their freedom today, so a good day for the three of us. Mask Mode means we can leave our rooms and venture down the hallway, hang out in the lounge, talk to each other, as long as we are wearing masks. The other two ladies here will either be out tomorrow or Sunday depending on their numbers.
So the perks of being out of Isolation. No more crazy room cleaning action each day, no more alcohol baths, you can wear your own clothes again, you can shower normally, you can BRUSH YOUR TEETH, you can get into all your stuff again, you can open the window and let in fresh air, no more having to microwave food, no more sterilizing dishes, and basically resume life as a normal person. On the first day you can venture in the hallway/lounge area with a mask on. Then on the second day you are allowed outdoors with a mask on. I do not care if it is raining hard like it did all day today, I will be outside tomorrow taking in the fresh air on numerous occasions. My legs could really use some exercise, being cooped up in a room for a week gets you all ready to take on the world.
It also means that tomorrow I will get my 5 hour infusion of Rituximab, which basically is another type of chemo med that strips the remaining cells of any memory they may have of the MS that may have hung on through the other chemo. You get this several days before being discharged from the hospital here. After that, theoretically my trusty neckline that I nicknamed my alien will be pulled tomorrow after that is done. Sometimes they wait an extra day on that, but I have been having a reaction to the tape that is holding my line in place and it’s causing some blistering and so they want it out, I’m cool with that. I can’t wait to get a night of sleep without it dangling in my neck, so here’s hoping it gets removed tomorrow. I’m cool with getting stabbed with some needles for a few days for the blood draws and any possible infusions to have it gone. The nurses here are awesome and hit the vein on the first time every time, so it’s not a painful thing. Unlike the blood draws I’ve had done in the US where it’s several tries to hit a vein and then I’m left with giant bruises everywhere, the Russians have this figured out, they need to teach the US nurses how to properly do this.
So obviously that was my excitement for the day, I gained my freedom back. I spent a bit of my day chatting with my stemmie birthday brother in the lounge. He’s from Norway and we do have quite the language barrier going on, but we do manage quite well with each other now. He has family that will be here tomorrow to visit him and will be with him until he leaves on Tuesday, so he is quite excited for that. It’ll be nice when the others can emerge from isolation as well, so we can all interact in person again as opposed to just chatting back and forth on facebook. I did however go down to harass my Aussie buddy through her door because we have a bond here and it’s nice to actually hear her voice again, it’s been a long time.
So onto the events of my day, since I already covered the important part. I was up around 4:30am this morning, just couldn’t sleep anymore. It wasn’t a great night for sleep, but I still woke up pretty refreshed. 7:00am my girl Olga was in to do my blood pressure and temp check, all good there. She was done with her shift so not sure when I’ll be seeing her again, but I’m sure I’ll see her again before I leave for home. My morning blood draw and steroid infusion was really late for me today, didn’t happen till 7:10am, but the nurse said it took longer because they had to mix me up a different dose of steroids because I’m being weaned off them now. So worth the wait I guess, much smaller bottle, lower dose, went quick.
Breakfast #1 showed up at 8:45am and consisted of a semolina/corn type oatmeal mix, bread, baby yogurt, tea, and more sugar packets. Not a super bad breakfast, I ate it, made the white bread into garlic bread, and made myself some coffee to go with it. I did eat my normal cereal bar, protein bar, and protein drink prior to that after I woke up, because I need food in the morning for my steroid addiction. 11:40am Breakfast #2 showed up, it was a hard-boiled egg, chunk of beef, 2 cooked apples, and the usual cup of tea/broth/whatever. I eat everything now, minus the tea mixture, so all was good there. Only downside is that egg was freaking hot when it showed up, it took almost 10 minutes before it cooled down enough before I could actually peel the stupid thing to eat it. I knew it was fresh.
Dr. F stopped in around 12:30pm for his final check-in for the day, quite early. All good and he was on his way. He works hard, can’t blame the man for leaving early today, I mean he is married, has a family and a giant cat, he needs to spend time with them too.
Then the nurse came in to clean, no crazy cleaning action today. Just new sheets, new towels, scrubbed the floor, wiped down the basic stuff, cleaned the bathroom, hauled off some of my isolation stuff, and she was on her way. This is one of the nurses that you just cannot make smile, she is a stern one that just orders you around in Russian and frantic pointing, I was ordered to sit on my chair for the whole cleaning process before she ordered me back to the bed while she did the floor. This is the notorious nurse in red. There are two that wear matching outfits, one you can win over, this one nobody has had any luck with so far. I haven’t seen her in over a week, so I’m guessing she was on vacation, so I can’t blame her for being a bit hostile, coming back from a vacation is never pleasant. I don’t think I’ll be able to win her over, I tried, but completely failed.
2:20pm rolled around and I got my final stimulation injection done. Yay no more shots for me, well at least of that type! My nurse today was on top of things, she’s all about efficiency, she wastes no time, roll up the sleeve, she sprays me down, stabs me, gets the gauze on, then hooked me up to my lowered dose steroid infusion and was on her way. Like before smaller bottle, lower dose, went super fast.
Around 3:15pm Dr. Nikolai popped in to see how I was doing. All good there, he was happy to see me free of Isolation and making progress on growing my new immune system. When one doctor is gone, the other is here without fail. Throughout the day Anastasia also popped in a couple times to congratulate me on being free from Isolation and then also to inquire if I needed anything at all. Luckily with all the miscommunications over the past few days in trying to get gauze for my alcohol baths, I am well stocked on everything else I will need for my rest of my days here. And at one point in time another nurse restocked me on protein drinks, lucked out this time, got 2 strawberry, 2 chocolate, and 2 banana, can’t complain. They will accommodate you if you have flavor preferences, but other than the other godawful brand of coffee flavored ones, I’m cool with any flavors and enjoy the variety. I’m easy to please.
Now back to the oh so fun topic of food. I have the menu down, I called every meal today before it showed up and was 100% accurate for the entire day. Considering some of the meals, this lunch is one of the more enjoyable ones. Dinner not so much. Lunch showed up around 1:45pm and was rice, a chicken dumpling/loaf type thing (the meat in these do vary, I think depending on what they have left in the kitchen), veggie soup, and bread. Like I normally do, I cut up the dumpling and dumped it in the soup, along with the rice and ate it like that. I saved my bread for dinner because I knew what was in store for me there. Dinner showed up around 5:45pm and was another chicken dumpling/loaf thing, buckwheat, beef baby food, bread, cookies, and tea. Sometimes I will do the buckwheat, other times I just am not in the mood, so I did ditch the buckwheat tonight and went with a pack of mac and cheese I brought from home. I still have several left and don’t want to take them back with me, so figured it was a good time to use one up. I also brought back the bread from earlier and made myself 2 pieces of garlic bread. Then for the cookies, I mixed things up tonight and put peanut butter on them, a good change of pace.
And that pretty much was my day. Apparently when you get out of isolation they no longer do numerous blood pressure and temp checks, so no real interruptions for most of the day. I did spend a good portion of my day cross-stitching as an activity, didn’t color at all. And then some of my day was spent reorganizing my stuff, getting my clothes out, reorganizing my suitcase, getting myself all cleaned up, brushing my teeth, etc. You won’t realize how exciting brushing your teeth can be until you don’t do it for a week, it’s quite invigorating. And then in the evening it finally stopped raining so I could open my window and enjoy some fresh air, and the air was wonderful, it’s always so nice smelling after a good rainstorm. Now both windows do open, the other side doesn’t have a screen on it, and I have a little ledge on my window, it acquires pigeons, I think if I opened the other side, I’d end up with pigeons in my room….. The windows also do open so just the top is vented for less air flow, so you have all sorts of options with the windows, just more options if you don’t have a ledge with pigeons….
Now onto the whole are you seeing any improvements, having side effects discussion for the day. Improvements are about the same. I am having some pretty intense tingling sensations in my feet and hands at times. I’d normally say that’s a bad thing because it really is irritating as hell, I’m not going to lie about it, it’s uncomfortable and really not pleasant at all, and I know it is going to really affect my sleeping tonight; but normally my feet are 100% numb, and I don’t have a lot of feeling in my hands. So I do know that tingling is a very good sign of regaining feeling, so I’m happy with it, even though it really is driving me insane at times. So I guess we can chalk that up on the improvement side of things, we’ll see how that goes over the next few days. My really nasty, huge, bad located spinal lesion is the one causing all my numbness issues, so any improvement there at all would be freaking amazing, because spinal lesions are usually the ones that you are stuck with the damage, brain lesions are the ones that tend to see more improvement with, so here’s hoping for a bit of repair work on that one. I do know that the first few years are a rollercoaster, improvements that come and go, but hey any feeling is better than none at all. As for side-effects, nothing major yet. Some night sweats, hot flashes, but not as bad as earlier on. Dr. F did tell me today that now that my new immune system is taking off and the stem cells are starting to really engraft in, this is when the bone pain will start occuring. It may be mild, it may be severe, everyone is hit differently with it, but it is something that I should start experiencing soon. I do not look forward to it, I knew about this going in and am content with dealing with it. Just hoping I luck out and end up on the mild end of the spectrum.
Onward to tomorrow and my 5 hour infusion and the chance to escape to the great big outside world!