Today was the day that really completed up my entire HSCT treatment process, it was the day of my final infusion that completes the treatment. The next few days are just blood tests and days to recover before I leave for home. It’s bittersweet really. It’s been an easy month, a rough month, an interesting month, and in a way it will be sad to leave, but then again I’m thrilled to be done with it all and headed home next week. It’s a whole lot of emotions to take in at once.
This won’t be a super exciting blog post today, just covering the basics on my day. Day started out around 6:20am when my nurse came in to do the daily blood draw and my tapered down steroid infusion. It went fast. No more blood pressure/temp checks anymore, which is nice. We are just supposed to take our own temperature a few times a day and let them know if it’s out of our normal range. And then of course I did my normal ravenous eating before breakfast arrived, today was a granola bar, protein bar, can of peaches, and protein drink. Yep I’m a pig, oink oink.
8:50am Breakfast #1 came and out of all the breakfasts this is starting to be one of my preferred choices. Cream of wheat type slurry, hard-boiled egg, bread, tea, and more sugar packets. For the life of me, the gal will not stop bringing me sugar packets no matter how many times I try to tell her no. Now the Norwegian gal in the group has managed to get hers stopped, not quite sure how she managed that one, but I’m still stock-piling here. Good thing my girl Olga here loves sugar and hopefully she’ll be able to clear my stockpile out once more before I leave for home. It gains 4 packs a day, so it doesn’t take long for the pile to get out of control. And then Breakfast #2 showed up around 11:45am, fairly normal meal there. Hunk of beef, 2 cooked apples, baby yogurt, and cup of the plum tea mixture. For both meals I ate most everything, minus the tea and the brown bread, still can’t stomach the nasty brown bread, not sure what grains are in it, but it is just horrid.
So since I am out of isolation I don’t have to contend with any crazy ass room cleaning rituals anymore, which is quite nice. Just got the basic daily room cleaning at 9:30am. Nurse wiped everything down, mopped the floor, cleaned the bathroom, and emptied the trash. Nothing super exciting. I got to remain sitting on my bed the whole time and just let her do her thing.
Dr. Fedorenko was in at 10:00am on the dot to do his usual routine. Took my blood pressure, all normal there. Then did the normal checks on my heart and lungs to make sure all that is good, which it was. Checked my neckline and bandage and was happy with that as well, my blistering is disappearing so he says we will keep the line until Monday for blood draws unless it get’s worse, so stuck with the alien for a couple more days. Then we got down to business with the day’s numbers. My Leukocytes are now at 3.35, so rising at a good rate. My platelets also took a huge jump and rose by almost 50, I’m at 140 now and almost up to normal range. Hemoglobin still low but slightly rising. All should start taking off now and getting into normal range with the new immune system starting to take off. He said my numbers were strong and that my 5 hour Rituximab infusion would begin in 30 minutes. He explained all the possible side effects, mainly the super rare ones being in the form of lung/chest pain, and said to page the nurse if anything seemed out of the norm during the infusion. Then asked if I had questions, then he left with his daily handshake, and smile and was on his way. So like always when the doc says 30 minutes, things usually happen instantaneously. And in less than 15 minutes I was already hooked up.
So at 10:15am I was hooked up to a bottle of steroids set to drip at a pretty fast speed. Had my friendly red outfit nurse today that speaks pretty much no English, but she sure is a happy little thing and I’m sure is saying all sorts of nice things in Russian, but she gets out the important words like what she is infusing and then hands me the device to let her know when it is done so I can get her back in the room. That bottle was done in under 10 minutes, so I paged her back in, and then she started up the Rituximab infusion, which is a 5-6 hour infusion and is set at different drip settings throughout the process. It’s done over the span of 4 different drips courses, they start it off super slow and then speed it up a bit over time, it’s still dripping super slow at the end of it all, but double what it started out as. So for the first 15-20 minutes I was dripping at setting number 50, that was then upped to setting 70 for another 15-20 minutes, then it got moved to 90 for another 15-20 minutes, then it got bumped up to 100 for the duration of the infusion.
Now about this Rituximab infusion. It is another type of chemo drug, it basically strips all memories off the B cells, so theoretically if any MS related signals remained, it should take care of it. This is more just to ensure that stuff is wiped out, it is the other chemo that was done previously that did the real work to wipe out the immune system, those were the important doses and that dosing amount and exact dosing schedule is something that people need to focus on when picking a destination out for doing this procedure, because the amounts of that drug used and time schedule are not the same at all locations and that can affect the outcome. Russia does not require nor recommend follow-up infusions of Rituximab unlike another location does, because really if the procedure didn’t work for you, it will not suddenly solve that issue, it will just mask it for longer periods of time before you figure out it didn’t work for you. This is the same medication, under a different name, that they are playing around with for types of progressive MS to slow progression if given to people at set intervals throughout the year, they are seeing that it can slow progression by wiping out the memory of the B cells, but it doesn’t actually do anything against the MS itself. If you do have a particularly aggressive type of MS, then Dr. F does occasionally recommend follow-up doses of chemo, but of an actual chemo drug itself, not Rituximab and if people seem to have failed the procedure, which does happen, there are percentages given for a reason, then he also recommends following up with some doses of an actual chemo drug.
But enough about that and back to me getting this 5-6 hour Rituximab infusion. So going into this I had read previous blogs about this experience and also had feedback from people who had just had it done in the past month, I was getting mixed reviews. So many people in the past said this is the day to wear another diaper because you are hooked up to this for 5-6 hours and you are not allowed to leave the bed at all, it’s miserable, etc. More recent patients said it wasn’t a big deal and you could leave your bed. Not sure if protocols changed over the years, but it wasn’t bad at all, no bed confinement. Even Dr. F said I could leave the bed and do whatever as long as I’d drag my pole around with me. So it wasn’t a bad 5-6 hours. I was able to go to the bathroom if I wanted to, I managed to get up and retrieve Breakfast #2 and Lunch and eat them, as well as take my dishes to the bathroom and wash them afterwards, all while dragging my pole with me. When I wanted snacks or wanted to open/close the window, just took my trusty pole with me. No biggie. Probably could have headed down to the lounge if I wanted to as well, as long as my pole came with. I spent a great deal of my infusion just coloring and chatting on facebook. I rested up for a bit in the middle, but that was it. Then a fellow patient who was just released from Isolation today came in and chatted with me a bit as well while I was getting my infusion, always good to reconnect with people in person that you haven’t seen in over a week! I did have to plug in my pole for a while though, it did start having a low battery, so I left her plugged in for about an hour, before pulling the cord again, and she was good to go for the rest of the infusion. But if I would have needed to use the bathroom in that time frame, would have just needed to unplug, head to the bathroom, then come back and plug in again. Easy peasy. I didn’t really have much in the way of side effects from the infusion, my lungs did feel a bit uncomfortable at times and my throat was really dry at times, but that was it. Not bad really. Neither of the other 2 patients that had their infusions today had any bad side effects either. Guess we have been a lucky group, none of us have suffered any horrible side effects the entire time we’ve been here, but for the most part we also have all been super positive and had fun with our entire experience here so perhaps that helps, Dr. F is all about being positive, and we sure have made the best of our time here. My infusion ended at around 4:15pm, so closer to the 6 hour mark for me, but not a big deal, not like I had pressing plans for the day. All in all, I didn’t mind the infusion and it was pretty much my final chapter in treatment here.
So in the timeframe of the infusion I had 2 meals, Breakfast #2 that I covered earlier and then Lunch. Lunch was the standard meal for the day. Another chicken dumpling/loaf type thing, just like yesterday, along with mashed potatoes, pureed veggie soup, and bread. I ate it all, nothing super exciting. Made up some garlic bread to go with it, and downed one of my saved cookie packs that I covered with Nutella. Then had a protein drink. I also ate several granola bars in this time frame because I am still feeding my steroid addition, I do hope this curbs soon, it is really getting out of control. But I did this all just toting my trusty pole all around the room.
Also in the time frame of the infusion and afternoon Dr. Nikolai stopped in several times to see how things were going and to check how I was feeling, etc. It is the weekend so Dr. F tends to go home early in the day, but Dr. Nikolai is there for the duration of the day, so if you need a doc, one or the other is always on hand.
So what did I do with the duration of my freedom after the infusion. Well of course it was raining outside again, so I opted to not go out, but all was well, all the newly freed patients as well as some in the chemo stage were hanging out in the lounge, so for several hours we were sitting around and talking, discussing our isolations, what we did first upon gaining freedom, and then chatting with the chemo patients on what they had to look forward to, they had lots of questions for us. And most of my time was spent chatting with 3 Norwegians. At least they were speaking in English with me for at least half the time, so it wasn’t super awkward, but I do also know that learning Norwegian is difficult, so I don’t think I’ll be picking up the language anytime soon. But what I have really gathered in my time here is that Norwegians really are fun people to be around, always happy and loving life. I totally understand why those Scandinavian countries always rank at the top of world lists for happiness, they are just happy people with such positive energy, I just love it.
And just for the record since I mentioned how amazing teeth brushing was yesterday, it’s not just me saying how amazing it is. It was hands down the top choice amongst all former Isolationists for the first thing to do upon coming out of Isolation. So yes after a week or more of being stuck in a room, people could care less about anything else, other than brushing their teeth. A close second place was wearing one’s own fitting clothes again, but teeth brushing was the real winner. So anyone going to Moscow soon, you’ll appreciate a good teeth brushing when you gain your freedom. I will say that me and others did opt to bring a brand new toothbrush to use after Isolation, just to be safe of any old germs lingering on the old ones, can never be too safe, and seriously tooth brushes are like $1.00 not a huge investment.
So back to the topic of food. So my dinner showed up when I was in the lounge and I really could have cared less because I already knew what it would be and how disappointed I would be in it, so I just left it sit in the room and continued to hang out in the lounge, I mean really I had no human contact for a week, people over a crappy dinner won the evening. It did show up around 5:45pm and I ended up back in my room around 7:15pm. Dinner was a really thick corn based soup, raisin cream square, bread, cookies, and tea. Nothing super exciting. I did zap the soup in the microwave and ate part of it, but really even with my steroid inducing eating rage, it really was not super appealing today. I ate most of the raisin square as well, but I’m really getting sick of them. So after picking at that food, I opted to make myself up a bowl of mac and cheese because I still have some I want to use up before leaving, made up 3 pieces of garlic bread, ate my pack of cookies with nutella on them, and called it a night on food. I was still hungry, but jesus I have to contain this steroid eating eventually.
And that for the most part was my day, nothing super exciting, my long Rituximab infusion took up most of the day. For activities I really just colored. Finished up one picture and started another. Really wasn’t in the mood for cross-stitching today. Then of course while coloring I was listening to music videos on YouTube and occasionally chatting with people on facebook, especially my Aussie gal here in Moscow who is the last remaining one stuck in Isolation, but she will be free tomorrow and I can’t wait to see her in person again. Me and her have really made the most out of this whole experience, so we have a special bond going on.
And for just a random topic for the day, my window/pigeon problem. It appears that several people thought I was joking about my pigeon problem on my window ledge, I really am not losing it here, it really is a problem, my window acquires pigeons, this one pair especially is quite fond of my ledge and spend most of the day here. They would just come in the room if I opened my one window, seriously, I am not nuts, I have a pigeon problem. They have entertained me throughout isolation though so I cannot complain too much about them. But here is some proof of my pigeon issues, they do exist…. And just for fun in taking a poll of other patients, we’ve decided to name this pair Putin and Trump, ha!
So I’ll end this blog like usual discussing improvements and side effects from the treatment. As for improvements, still about the same. My intense tingling issues from yesterday have gone done significantly, and I do have some feeling in my feet now, they aren’t 100% numb, hands about the same amount of feeling as always, just more tingly. Sleep last night was rough because of all the tingling, but I did eventually pass out and slept through most of the night and woke up about my normal time here. Not super well rested because of not being able to fall asleep early, but hey I got sleep, I’ll take what I can get. As for side effects, nothing major to report for the day. Still no intense bone pain here, although a couple other ladies here are having some bone pain and are opting to use pain medication to treat it. I do have some in my left arm, but that is all and it is tolerable. I had some unpleasant sensations in my lungs and a dry throat with my infusion today,but that subsided when the infusion was done, so no biggie. No major hot flashes or night sweats to report either. So all in all a good day in that regards. Gotta appreciate the good days when they come, because I know that bone pain could come in at anytime.
So since my final treatment step was today, what does the next few days hold in store for me. Well essentially I am done and am now just resting up until I leave for home on Wednesday. I’ll have daily blood draws to check my numbers until I leave and that is pretty much it, perhaps infusions if needed, but otherwise I’m pretty much done. Then Monday after my blood draw, unless needed to be removed earlier, I will have my trusty neckline removed that has been with me for so long now. Then before I leave I’ll get a jab of steroids in the butt to tie me over till I get home as well as a jab in the belly of some meds to help prevent blood clotting on the long flights home. Then of course a final consultation with Dr. Fedorenko along with him sending me home with all necessary meds. And then after that I will be headed home. A bittersweet journey.
And on a completely unrelated to me note, but useful for those coming to Russia soon. I did find out from the current chemo patients that when they go into Isolation next week they will be moved to the brand new remodeled Isolation rooms on the 3rd floor. So if you are following my page on Facebook, “Cat’s HSCT Journey” or on the Russia HSCT facebook group, scroll through and find the link to a friend of mine named Alex’s blog, who recently finished up in Moscow, that gives a tour of the remodeled 3rd floor and you will be able to see what the new isolation rooms look like, even though in that blog post they were not currently finished at that time. So for those coming soon, you will get the new and improved rooms for Isolation. Then I believe the 4th floor will become the main floor where people will reside prior to Isolation, while they start remodeling the rooms on the 2nd floor. But I can’t complain with my current room that I had for Isolation, worked well for me!