Reality is really starting to set in now that I’ll be going home in just a few days and that my Russian journey is almost at its end. It’s bittersweet really. Hard to put into words. It’s been quite the ride, with highs and lows, but the one thing that has really meant the most to me here is the friendships I have made. My group in Russia I believe is the largest group of international patients treated at the same time up to this point in time, we were a group of 5, usually the max is 3-4 at one time. We were an interesting mixture of folks, that is for sure. 2 Norwegians, 1 from Britain, 1 from Australia, and then me from the USA. So three native English speakers all with different accents and dialects and 2 Norwegians, one with very good English and one with not so good English. 4 women and 1 man with a variety of ages. Makes for some fun times. In order to make it easier on the staff we were in two groups. Me, the British gal, and the Norwegian guy all started on April 25. The Aussie gal and Norwegian gal started on April 26. But other than our official stemmie birthdays being a day apart, we’ve pretty much done everything on the same schedule just 1 day apart, so we’ve done the whole journey together. And today officially everyone in our group of 5 is out of ISOLATION and together again!!!! It was a great day.
Even with language barriers in place we’ve done our best to interact with each other as much as possible, both in person and then also on facebook when we were isolated and apart. Checking up on each other at times, seeing how we are doing, when we think we’d be free from Isolation, the whole thing. The language barrier for me has been hardest with the man from Norway, but dammit we have made the best of it and we have still had some good conversations even though it may take us a while to get across our point. Our real breakthrough that really got us talking one day was discussing US reality TV shows. Ice Road Truckers and Deadliest Catch, the Norwegian guy of course loves Captain Sig Hansen given he’s Norwegian, we discussed the show, our favorite captains, how we missed Captain Phil and how the show just isn’t the same anymore. But we’ve had some good conversations in the lounge since then and we both are really looking forward to heading home. Me and him are also the 2 tongue eaters in the group, everyone else has tossed their tongues, but not us, we both turned into ravenous animals in Isolation and have eaten everything in sight, so we’ve bonded over the tongue as well, hahaha. I’ve had some good conversations with the Norwegian lady as well as her amazing husband who is really one of the most fun guys I have every encountered, the man is seriously always happy, Norwegians are so awesome for this, such great attitudes, it’s contagious and I love it. We’ve discussed politics, family, our lives, our countries, our cultures, everything it’s just fun to have conversations with people from other parts of the world, you learn so much.
Obviously for the native English speakers you do have more opportunities to interact and talk because language is not an issue at all, although with all different accents and dialects it is entertaining hearing terms for different things in the different dialects. I’ve learned a lot of new terms to take home with me and try out on my American friends who will then think I have completely lost it. I especially blame my Aussie buddy for that one, she’s hooked me up with all sorts of fun terms now, she’s a bad influence, but in the best way possible. So I have bonded the most with the fellow English speakers, we called ourselves the 3 C’s, given our names in real life all start with the letter C; we also had the least amount of mobility issues of the people in our group so we were able to actually go outside, explore town, and do things with each other before we got too far into our treatment. We’ve been there for each other during the ups and downs and have really bonded during our time here. We’ve chatted through facebook the entire time in Isolation and in person outside of Isolation, it’s been full of fun and laughs. It’s friendships that will last forever.
But I do have to hand it over to my Aussie buddy and her hubby, they really have been amazing to me in my time here. I was the only person here who came 100% alone, I had nobody my entire time here and in the beginning they included me in some of their activities and didn’t have to. They got me hooked up on using the trams and metro, we went to Red Square and the Kremlin together and did the double-decker bus trip together, along with trips to the marketplace. I mean without their guidance in the beginning i would have never been able to do all my crazy exploring of Moscow alone later on, they totally got me started on all that. We’ve had a lot of good times together and really have bonded. I mean hands down they are some of the most awesome people I have ever met in my entire life and I do plan to visit them in Australia some day and they plan to come visit the US in the future as well. This truly will be a friendship for life. Even if this treatment would end up failing for me, the trip was well worth it for me just for this friendship, I truly love ya Cathy, you are my girl, I’ll never forget you and all the fun crazy things we have been through together…
And in my time here as well I’ve met other great patients as well. Some I barely got to meet as I was starting treatment as they were getting ready to leave, some I barely got to see before they got Isolated and then I was Isolated and then we never got the chance to see again. And now that I’m free from Isolation I get to meet some new patients for just a few days before I leave. Even if we never get the chance to actually talk more than a few minutes, you still form a friendship with everyone you meet here regardless of where they are from. We are all here for the same purpose, to rid ourselves of MS or another AI disease, at the moment everyone here has some type of MS however. It is a friendship and bond that you really cannot explain to someone that isn’t here. Here we all go through the same experiences, the same emotions, we battle similar things in our lives that regular people just do not understand or choose to not understand. It’s an interesting thing really and would probably make a great study for someone. But throughout life now we have this bond and the friendships will last a lifetime, truly amazing. And I’m pretty sure that anyone who has been here and been through this treatment feels the same way.
So enough of that sappy shit for the day, let’s discuss the events of the day shall we. My days have really gotten boring, not gonna lie, most exciting part of the day really is discussing food. I’m on my final days, don’t get much excitement here anymore, tomorrow will the most excitement for a while, neckline comes out, yay!
So I woke up around 4:30am, about normal for me here. It’s pretty much fully light out at this time of day anyways now, White Nights of summer are starting to kick into full force. I slept pretty good last night, no night sweats or hot flashes. Woke up once to pee, that was it, fell right back asleep, can’t complain was a good night for me. Of course I always wake up being a ravenous animal that must eat now. I ate my final cereal breakfast bar that I had, a protein bar, and then downed a protein drink, and really even that did not tide me over till actual breakfast arrived, but I held off on eating more food, trying to curb my steroid eating a bit.
At 6:45am the nurse popped in to do my morning blood draw. I also finished getting weaned off the steroids this morning, got a large syringe full in my neckline and that was the final dose. A good thing really, I need to curb this steroid induced eating rage that I am currently in. I mean it helps with the weight loss from the chemo, I’m about the same weight I started, but still I would prefer to stop eating everything in sight, I mean I am running out of backup food here. No pics today, because the nurse just quickly did the blood draw, injected the steroids, and was off.
8:45am Breakfast #1 showed up. The whole meal plan today followed schedule. It was regular oatmeal, bread, baby yogurt, tea, and more freaking sugar packets to add to my stockpile. I ate everything and then ended up taking my piece of white bread, adding 2 more to the plate, making garlic bread, and finished off breakfast with that. I did brush my teeth before the doctor came in, don’t want to scare him off with garlic breath.
9:30am on the dot Dr. Fedorenko came in for the daily meeting. He doesn’t stick around long on weekends, he just comes in does his rounds and then heads home to his family, he deserves the time with them, seriously the man is here every single freaking day of the week. Dr. Nikolai is around the rest of the day if anyone has questions or needs anything. I was the last room hit today, but all is good, not like I had pressing plans that I needed to attend to. But he quickly got down to business, did the blood pressure and lung/heart check, all good there. I’m really quite boring for him in those regards, never any variation. My numbers are all where he wants them to be, rising right on schedule. Leukocytes 4.03, not an impressive leap from yesterday, he feels they will massively jump tomorrow. My platelets jumped up another 40 and I’m now at 182 and in normal range, he feels that is what slowed down my leukocyte count for the day, usually both won’t massively increase in the same day, but since those are in the normal range now, now my leukocycte numbers can start taking off. Hemoglobin still a bit low but he thinks it’ll take a good jump in the next day or two. But I did still hit the 4.0 threshhold of being allowed to technically leave hospital grounds if I choose and be in public with a mask on, so there is that perk. I don’t plan to leave hospital grounds though until Tuesday, until then I will just escape and walk around outside when it stops raining….. He gave me a rundown of the events tomorrow which is the last real day of excitement I’ll have here. I get to pee in a cup by 6:00am and leave it by my door for the nurse, they will then come in and do the morning blood draw, and then I will get a jab of steroids in my butt to hold me over on the trip home. I’ve got enough cushion on my butt, so not concerned about that one. They will do a full urine panel and blood panel tomorrow so Dr. F will have all sorts of info when he comes to chat tomorrow. Then a nurse will come in and pull out my neckline, then I’ll get to lie in bed flat for at least an hour holding gauze on my jugular vein with a lot of pressure on it to ensure that it doesn’t bleed out, this neckline has been in for almost 3 weeks so it takes a lot of pressure to get that to close, but Dr. F said it is wonderful that my platelet counts are now in the normal range because that will speed up that process and help the wound clot faster, it’s a lot more worrisome if you have low platelets. Then the bandage will be well taped in place and the nurse will come in and check that numerous times throughout the day to ensure that there is no crazy bleeding going on and then obviously if I notice blood leaking through the gauze, immediately contact a nurse. Then Dr. F asked if I had any questions or concerns, did the handshake and smile and was off for the day.
After that excitement I headed down to the lounge to see my Aussie buddy, she was the last to escape Isolation today and I missed her, so it was so nice to get to hug her and chat with her in person again. And then I got to witness the reunion of her and her hubby, so sweet and touching, they have such a great relationship. Then I continued to hang out there with some of the Norwegians with some occasional English conversation mixed in to humor me, and then I became overwhelmed with Norwegians since pretty much every Norwegian in the building ended up showing up there and then they got into some crazy Norwegian conversations that just confused me, and Breakfast #2 showed up, so I headed off to eat, but I did at least meet all the rest of the Norwegians that are currently being treated, and wow there are 7 total here now, this place is overrun with Norwegians at the moment. I decided I must learn to speak Norwegian…..
So I headed back to my room at 11:45am to chow down on Breakfast #2. There isn’t much variation when it comes to this meal, so today’s option is always a win for me. 2 cooked apples, hunk of beef, hard-boiled egg, and then the plum tea mixture stuff. The tea mixture went down the drain like always, but I did eat everything else. Then I got into one of my saved packs of cookies from dinner that I had saved from my chemo time, slathered them with Nutella, killed off that container sadly, and chowed down on that as well. Then I made myself a cup of coffee to go along with it.
12:15pm rolls around and in comes my girl Olga to do my daily room cleaning. Chatty like always. Chatted the whole time she was cleaning. She did inform me that she will most likely be the nurse doing my final blood draw for tomorrow and my butt jab. Gotta say she has been all about trying to scrub my back the whole time in isolation, so it really is only fitting that she will be the one getting to see my butt. Sadly though she starts her actual weekend after tomorrow morning so it will be the last time I will get to see my girl before I go home, kinda bummed, we’ve bonded. I asked if she’d do a picture with me, but she really is not into pics, so not sure if I will get one, but I do plan to plead with her for one, we will see if I am successful, I wouldn’t post it publicly out of respect for her, but would like one for my own album. Most nurses here have asked that people do not post pictures of them publicly and I do respect that, they are doing their jobs, they are not on display. Dr. F and Anastasia obviously do not mind, but the nurses do, and I respect that. It’s why I also do not post pictures with nurses on my personal facebook page or page related to my HSCT journey. They deserve to be respected and I honor their wishes. The one exception was when my orginal neckline was removed and that nurse was cool with me taking the pic and posting it, I asked permission first by the way out of respect, I’m just like that. So for any future patients that do intend to blog or post about their experiences, please do respect the nurses and at least get their approval before posting pics of them publicly.
So back to the topic of food. So 1:45pm Lunch showed up. It’s one of the better options for the week. Luckily today it was the cheerful happy food gal that just loves me, so she gives me bigger portions, pays to be nice and friendly and perhaps skinny, I think she feels she needs to fatten me up, but whatever, more food is good for my steroid eating rage. It is the one day a week where you get pasta so it’s a treat. The pasta comes with a side of meat/veggie stew mixture that just is great to just mix all together and chow down. The meat in this mixture varies, I think with what they have left. In past weeks it involved chicken gizzards and beef heart, today I think it was just some chunks of chicken and beef, nothing all too unique, kind of depressing for me really, I do like the oddities, adds some excitement to the meal. It came with a bowl of blended veggie soup and bread. I ate everything, but I did control myself and saved my bread for dinner since I already knew what that would be and I knew I’d want the delicious homemade bread later on with that meal. They do make everything from scratch here (minus pasta and rice) including the bread, so the bread really is amazing. I mean I cannot stomach the brown bread they give you, but I’m sure for those that love it, it’s probably amazing, but the white bread really is orgasmic, it is a wonderful recipe they use for it.
So what did I do with myself on this day. Well I spent a lot of the day coloring actually, just felt in the mood to color. Worked on one picture all day long, it was a detailed one and it was really quite relaxing just to lay around and color. I had no desire to break out my cross-stitching. My goal was to go outside, but man it just kept raining all day long. Finally on one break I did manage to get outside for about 15 minutes before it started raining again, but it was sure nice to be able to get outside and actually walk around and enjoy the fresh air. And what did I learn in this brief walk around outside, that a week caged up in a room really messes with your body. Leg strength and endurance is just not there, it’s gonna take some work to really be able to get back up where I used to be. Hopefully the next few days have nicer weather so I can get out more and walk about more, gotta use the legs! But I did take a few pics when I was out and about, enjoy!
Once I got back inside, I went to fill up my water bottle in the lounge and saw my Norwegian stemmie birthday brother sitting there so decided to hang out and chat for a bit, then we soon acquired our Norwegian stemmie sister, her hubby, and brother. Back to me with all these Norwegians today… We at least spoke a fair bit in English, had some good conversations, especially about US politics, oh boy, the whole world sees our issues….. Then our Brit stemmie sister showed up with her man and they hung out for a bit before heading outside to take a walk. Good way to kill some time, human interaction is always good. But learned something exciting in that conversation, we can keep our neckline and take it home with us if we want, I plan to do that. Yes seriously I am weird like that, but I’m not the only one, several of us plan to take it home. I mean hell it has been attached to us for weeks, it’s a good souvenir from Russia. Stayed in the lounge till dinner arrived and dinner showed up early today, which is both a good and bad thing. Good because we all have steroid induced hunger rage, bad because it was early which means more time to think about food before going to bed….not a good thing let me tell ya.
So dinner showed up at 5:15pm…. I knew what it would be and it isn’t a bad meal, but not filling at all, especially when you are fueling steroid induced hunger rage, which is a real thing people. Seriously steroids require a lot of food, if you’ve done rounds of IV steroids or even oral steroids you sorta understand, but being on steroids for the long haul, oh it gets bad. I mean when you start eyeing the tinned meat baby food as a real food option later in the evening you know you have a problem…. But back to what we actually got for dinner. Today was a whitefish fillet of some sort. I think whiting or pollock honestly, not much flavor, not bony. So for someone like me who really isn’t into fish, the less fishy flavor the better. Then that came with a side of mashed potatoes. Many people think the mashed potatoes are bland and boring, but I think they make them quite good here and I’m from Idaho, the potato state, I know my potatoes, and I think their mashed potatoes are amazing, they taste like mashed potatoes are supposed to, no they have no added flavor, they taste like potatoes. You can easily add stuff to them, but whatever, I’m an Idaho girl I like my potatoes in any way, shape, or form. Then it also came with the usual bread, cookie pack, and tea bag. I had saved my piece of bread for lunch so made up 2 pieces of garlic bread, and then slathered peanut butter on the cookies and chowed all that down. Made myself another cup of coffee. Then I still ended up eating a granola bar along with that along with a protein drink. Still hungry afterwards, and eyeing the tins of beef baby food, but I am not that desperate and I will contain my hunger for the evening.
After dinner I just did more coloring. My girl Olga came in to empty my trash cans, we chatted a bit more, discussed her weekend plans, me leaving, all that good stuff. Now I’m finishing up the night by writing this blog.
So for the usual way to now end the blog post, how am I feeling. Actually today I’m doing pretty good. Have had zero hot flashes, zero sweats, no bone pain at all, feeling like a normal person, minus the crazy tingling in my hands and feet at times. Can’t complain. Any improvements, for the most part everything is staying the same. I do have a bit of feeling in my feet and I’m really not sure how to describe it, I mean it’s just an odd feeling to have any sensation in them at all, it’s been almost 2 years since I’ve had much feeling in them, so it’s something I am trying to grasp how to deal with. I mean I can rub them on my bed and actually feel the sheet, not like a normal person can, but it’s just a very, very odd feeling and will take a while to grasp and get used to. It is one of those things that unless you are in my shoes I just can’t explain it. In a way it is concerning to me to regain feeling in my feet because I’m gotten used to not feeling them and not really being able to control them and I often crash them into things, which normally isn’t an issue because I can’t feel them so I don’t feel pain in them. So now I really will have to focus on where my feet are so I don’t hurt myself. So we will see how that goes in the future, but for now I’m trying to grasp the concept that I can sorta feel things with my feet, like my shoes when walking, it’s a strange, strange thing and is really going to take a while to get used to, not gonna lie, it’s a bit strange, it’s almost like relearning to walk because the sensation is so intense and out there. And then randomly we can discuss hair loss. I have no eyebrows, I have pretty much no eyeslashes, and I’m about 75% bald on the head, I’m getting there.
But on a parting note for the night a picture of me in the great outdoors, well outside the door before I went back inside because it started raining, but hey I was outside!