Isolation Day #5…. Well really it was about the same as the past several days of Isolation, nothing special about it. Same routine, different day. Minus the fact the cleaning ladies were super slow today, making us sit around all sweaty and disgusting waiting for our new clothes and alcohol baths, not super pleasant as some of the effects of the chemo are catching up now, and sometimes you just really want clean clothes….
But on the topic of random things to discuss during isolation, let’s talk fertility in the future. It’s a big issue for many people planning to undergo HSCT, a possible outcome after all is said and done is being sterile, either going through menopause for a woman, or just a man being sterile. If you are past childbearing age it isn’t an issue. If you are wanting kids, then it can be an issue. So what to do about it. Well many women opt to freeze eggs ahead of time if they are single or married, and then some that are married or in relationships opt to freeze embryos for future IVF attempts. Many men freeze their sperm. I’m really not sure what the statistics are on being infertile after the procedure, I don’t think there is any hardcore evidence on it one way or the other. There have been quite a few women now that have gotten pregnant naturally within a year or two of treatment, how long you should wait until after treatment is up for debate. Some places recommend 2 years, others recommend a year, so it seems to vary. Many seem to accidentally end up pregnant much sooner by not taking any precautions. Personal decision, I don’t judge…. But if you want kids in the future, taking steps to improve your odds of that happening in the future should probably be taken. Some countries pay for this, others you pay for it yourself. Something you need to consider, since MS often affects whether people have any kids or the number of kids they have, and with a life free of MS that makes people question if they now do want kids, if they want more, all that good stuff.
So where do I stand on the issue. I’m female and of childbearing age. Obviously my rant from yesterday clarified that up for people about my children, I have them, I’m content with what I have, I don’t intend to have more. I am done having children. In fact prior to having been diagnosed with MS my husband and I had the discussion of kids and had decided 2-3 is what we wanted max, after our last one we decided we were content with the 2 girls we have and were done, that was prior to me even being diagnosed with MS. My hubby got snipped, we are done. Unless some amazing thing happens and that didn’t take, I don’t foresee anymore kids in my future. So prior to me having this done, I had no desire to freeze eggs, freeze embryos, or any of that. If menopause makes me sterile, I’m cool with it. I’m content with my life. Some of the other ladies here with me of childbearing age took steps to possibly have more kids in their future and have mentioned that on their own pages, good for them. It’s a personal decision and if a person wants a dozen kids afterwards, more power to them. But really it is something that you really have to ponder before having this done, because there is a possibility it won’t happen naturally later on.
I do realize then this can play into the whole religion aspect of playing god. Some religions are opposed to birth control and getting fixed, others are opposed to egg freezing and IVF. Again that is something that is up to each individual person to take up with their own religion and themselves. I personally am a spiritual person, but not religious, so nothing really pertains to me here. But again something to think about going into the whole thing if you are a devoutly religious person with really strict beliefs. I don’t judge others and hope others don’t judge me.
So not really a rant today, just more a random discussion of things pertaining to the treatment, now onto my actual day of isolation.
Woke up around 5:00am again. It’s just my wake-up time here I guess, can’t sleep past that time. Always hungry, breakfast doesn’t show up till close to 9:00am, so I ended up eating a cereal bar and protein bar to keep me going until I got the actual breakfast. I cannot function in the morning without food, gotta eat, I always eat first thing in the morning at home, just my thing. In all my years of working random jobs, it was always get up, get dressed, quickly grab food, then off to work. No sitting around not eating stuff for hours, this girl has got to eat in the morning. But to kill time like always I decided to color, because well eventually you know you will be disturbed for the morning blood pressure check/temp check, infusion, blood draw. So I finished up a picture i was working on yesterday, nothing too exciting, a fox themed one cause my oldest girl loves foxes for some reason. Then I started on another one to kill time. And for some reason the blog won’t let me flip the picture, why I’m not sure, it’s moody today, but here is my fox coloring.
Around 6:45am the nurse was in to take the morning blood pressure and temp, all good there, nothing super exciting, other than the fact that my thermometer is like the slowest thing ever and they always just give up and yank it out of my armpit after about a minute because it just will not beep. Hopefully with their upgrades and renovations they can get some of the snazzy head thermometers they use in the states, would save a lot of time for the nurses. Then I got my daily blood drawn out of my nifty neck lines, then hooked up for my morning steroid infusion.
8:40am Breakfast #1 arrived. Today was basic oatmeal, bread, tea, sugar, and CHEESE. Now with the oatmeal or porridge that comes daily, you never know what to expect, some days it’s bland, other days it’s super salty, today was just plain, so doable. Now cheese rarely makes an appearance, so on days it does, it really is an amazing thing. Many people save it for later in the day to melt on bread, but I just prefer to down the whole thing, if I have cheese I’m gonna savor it as cheese, not waste it on bread. I ended up making some garlic bread to go with my breakfast because well for some reason my body really wants garlic now, so I’m giving into what it wants. So like always lets cover Breakfast #2 as well, it’s about the same every day. It showed up around 11:35am and was 2 cooked apples, hard-boiled egg, chunk of beef, and plum tea. Well at least we assume the tea is usually plum tea, it comes in all colors and it really is some horrible nasty tasting thing that very few people drink, so I have no idea what it is, but the standard thing is to just call it plum tea. I think a couple days it was actually a type of bone broth instead, but very potent and not really drinkable. I usually make myself a cup of coffee to go with that meal. I’m from the US, I’m a coffee girl, don’t do the whole tea thing very often. Lately I’ve been taking a hot chocolate packet I brought from home and mixing it with the coffee, nice little treat, especially in isolation. Some pics of those meals.
Around 11:00am Dr. Fedorenko made his rounds, a little late for him, but he started on the other end of the hallway, so I knew from others I’d be at the end and I think a couple Russian patients were getting stem cells re-infused later today as well, so I’m sure he was prepping for that all morning as well, he’s a busy guy, gotta cut him some slack. But he did the normal vitals, all were good. Gave me my numbers. My Leukocytes are still holding around 0.07 and that is where he wants them to be. He feels they may stay about the same tomorrow or rise a bit, and then take off the next day. My platelet counts jumped up a fair bit, so I should not have to worry about a platelet transfusion at all, since they are in the mid-60s now and you have to drop below 20 for that. Two ladies here today with me in Isolation did have to undergo a platelet transfusion this afternoon and they did great with that, now they have Russian blood, can’t say I have that…. For women of childbearing age, you do have a greater risk of needing a platelet transfusion here, it’s included in the price and safe, so not a big deal if needed, and apparently it takes like 10-15 minutes and it’s all over. One usually does it, but if numbers don’t rise can take up to three, hopefully they will both be good after just one transfusion. But back to me, Dr. F thinks I may be out of Isolation on Friday if numbers are good, if not for sure on Saturday. Not really a big deal either way for me, I’m content. I mean I’m stuck in Russia for a set period of time anyways, not like an extra day matters. Only perk is not dealing with the frantic room cleaning and judo outfit each day, could handle going without that….
Today was a really late room cleaning, normally they are supposed to have it done before 11:00am at the latest, mine wasn’t done till 12:45 today, I was the last to be hit, but still everyone got it done late and we were really getting pretty pissed off about it. The effects of the chemo are catching up to us now, so night sweats and hot flashes are common, so you become a sweaty mess, and in the morning you really just want to take a shower, do your alcohol bath, and get clean clothes, so sitting around for several hours being a sweaty mess is really no fun at all. Fan is wonderful, but does not help with being a sticky mess. But like always I got my new clothes and towels got sent to the bathroom, actually took a shower today, sloshed myself down with alcohol, got dressed, and then went back to sit on my bed while the gal finished up my room and bathroom.
Somewhere in that time frame I also got my neck line bandage changed, prior to the room cleaning, I lost track of time there for a bit, I was just annoyed with being a sticky mess. With all the night sweats the bandage really became a sticky disgusting mess, I think most of us had that issue and we all ended up getting the bandages changed today, sweating + bandages/tape = bad combo. Lucky me I got one of the great nurses but she had a trainee with her to watch. So I was on display…. So she got down to business, had me lay on my side, ripped off all the old, doused me down with alcohol which burns like hell by the way. Dried if off, and got me all bandaged up nicely, unfortunately using the tape that makes me itch, but whatever I’m sure it’ll need changed tomorrow again, so maybe I’ll get the better stuff then. But the poor nurse trainee turned white and looked like she was about to pass out from watching. Now my neck line is not in anyways horrifying, it’s a line running into my jugular vein, not super disturbing. I mean I have crazy ass bruising going on, but I wouldn’t think it would be that disturbing to watch, I mean I have it stuck in my neck and I’m doing just fine. So that was my entertainment wondering if the little trainee would pass out. Gotta have some excitement for your day right????
So at 1:00pm on the dot, the nurse came in to do my mid-day blood pressure and temp checks. All good there. The poor nurses just keep getting annoyed with my super slow thermometer and usually pull it out before it beeps. But everything is always in range, so it’s all good. I don’t mind, in fact it’s nice if it’s not stuck in my armpit for like 3 minutes to get a reading.
But then my day got more excitement and entertainment at the expense of the new nurse trainee. At 2:45 it was time for the afternoon steroid infusion and stimulation injection. So in comes this nurse trainee alone, with my stuff. She really looked scared shitless, I mean I am not intimidating and smiled and said hi, but she was freaked out completely. Obviously I was her first attempt at every doing something like this alone and she was clueless, I really wasn’t sure what to think and was getting rather concerned there for a bit and thought I might have to page an actual nurse.. Well at first she grabbed my shot like they normally do along with the alcohol bottle and headed over, I rolled up my sleeve, stuck out my arm and was waiting to be sprayed down with alcohol, jabbed, and then holding gauze like normal, and she just turned white. She turned around, set down the alcohol spray and my shot, and looked like she was going to leave the room. A bit odd, since normally the shot is the first thing done and over with. Then she started trying to figure out my infusion. She grabbed one of my lines and didn’t flush it very well and tried to hook up the infusion to that, she couldn’t get it to work at all, it wouldn’t drip. So then she got all flustered, recapped that line, and tried another line, I have three so we have options here…. She struggled with that for more than 15 minutes, literally, I timed her. I was really thinking at some point in time I would just need to hook myself up, I’ve seen it done enough times, I think I can figure it out, not rocket science. But finally after more than 15 minutes she got it hooked up, and then just turned around and walked out of the room all white in the face, it was dripping like once a minute, literally, she never adjusted the drip, I timed that as well. But I at least know how to operate that little contraption, so I took care of that myself and got myself dripping at the proper speed and that sped things up considerably. Once that finished up I hit my call button and got the actual nurse, she unhooked me, shook her head all dumbfounded wondering why my shot was still sitting in the tray, so she sprayed me down, stabbed me, and was on her way. Was really quite the process today. I feel bad for the trainee nurse, I’m really not sure if she is cut out for nursing, good thing she didn’t have to deal with the platelet infusions down the hall, she might have passed out from that….
So before I discuss food, I’ll discuss the rest of my day. Dr. F stopped in around 3:30pm for the final check-in for the day, he always wants to make sure things are going good, feeling good, all that good stuff. He leaves with a smile and a handshake. Great man. Then prior to that I had a random burst of liquid nitrogen come flowing under my door in a giant cloud, was completely random and not expecting that at all. I think it was the leftover from the storage container they used to transport the platelets in that they threw down the hallway to get rid of. The guy across the hall got quite the show from that as well in his room. Added excitement for the day for free!!! Then my night finished up around 7:50pm with the nurse doing the final blood pressure check and temp check for the night. All good. She was a patient one, she waited the full 3 minutes or so until it beeped, that is dedication. Free till sometime in the morning when it all starts again.
So now back to the always fun topic of food. So the food is pretty much on a weekly schedule, I’ve been here several weeks, I know what to expect with just a few minor variations. This has its pros and cons. I know when good food is coming, I know when bad food is coming. I knew lunch would be okay, I knew dinner would be horrible, this is why we went with pizza last week on this day of the week, ha. Tomorrow however is tongue day, that’s the best day of the week!!! Lunch came around 1:40pm today and was what I was expecting, a blended broccoli soup, stew mixture, buckwheat, and bread. The stew mixtures are always a surprise though because it’s a mixture of whatever meat they have lying around the kitchen I think. Mine had chicken gizzards today and a chunk of beef heart, we had those a couple days back, another gal thinks hers had just beef, adds to the excitement. Usually the stew mixture and buckwheat are next to each other on the plate, today it was served over the top. I added mustard, nuked it for the designated amount of time and just chowed down. I was hungry, didn’t care how it would taste. The soup though was quite disappointing today, it was really watered down, not much flavor there. I again made garlic bread to go with my meal, along with a protein drink, and protein bar. Just need more food for my steroid habit. Now onto dinner….. It showed up around 5:45pm and was exactly what I was expecting it to be, a whitefish fish steak with skin attached with numerous bones, mashed potatoes, bread, cookies, and tea. Now I will eat pretty much anything here, honestly, but I cannot do these fish steaks. I have no idea what type of fish it is, but it smells horrid, it has giant bones, and it just tastes awful. I can down any of the other fish served here, but just cannot stomach this fish. It went in the trash, but I ate my potatoes, made more garlic bread, opened my last can of beans I had, downed the cookies, another granola bar, and had a protein drink. All in all not a bad meal, minus the fish that went in the trash.
So what did I do with my free time in isolation today. Well not a whole lot really, I wanted to work on my cross-stitching more, but I don’t like starting that until after the cleaning process, because it’s a lot to pick up and time consuming, so didn’t work on that till the afternoon, although I did get a fair bit accomplished on that. Plus being a sticky mess didn’t really want to take a chance of ruining my cross-stitching until after I was clean. I colored some more. Listened to some music videos on the internet, chatted on facebook with people, the usual things people do in isolation. I spent some time contemplating life and just relaxing, other than that just enjoyed my peace and quiet, knowing I have several more days of it to endure.
Now everyone wants to know what I feel like, what I actually feel like, not an act that is being put on. How has the treatment affected me. Honestly the chemo is catching up to me in the past few days. Nothing too extreme yet like some people experience, but I have been having night sweats and hot flashes, this happens during the day as well, just more irritating at night. It’s not to the point that my clothes are soaked or the bed is soaked with sweat, I just wake up right away sweating horribly and just get up and walk around to cool down and occasionally plug-in my fan and blow air on myself. But for me my upper body, arm pits, neck, and head become a sweaty mess. Hence the disgusting sticky neck bandage that most likely will be getting changed again tomorrow, I think it will be a daily event from now on. To help with the sticky factor, when this happens, I go in the bathroom and wipe myself down with a guaze soaked with alcohol, gets the sweat off, especially around the neckline bandage which is the main point I want to keep clean and dry. I’ve had some bone pain in my left arm, nothing too extreme either. That can be because of chemo, it can be because of the stimulation injections. Almost every single stimulation injection I have gotten has been in my left arm, I think because I’m right handed and they prefer to jab you in your non-dominant arm. Not a huge deal, I know that can get much worse and it often does for some people, so I’m content with what I am dealing with right now. Other than that I’m doing good. My vision is still 100% which is nice, I have more energy and can focus better on things, less cog fog I guess you could say for the MSers out there that understand. Other than that, life is good, can’t complain. I’ve had it pretty easy compared to some people in the past.
So today was Day #5 in Isolation, will most likely be here at least 3 more days is my guess. And I’m day +06 since my stemmies were re-infused in me. So far so good, the new immune system should be taking off in the next day or two.