So this post is quite overdue, but I just never had the time to write it and was finishing up other blog posts. So how was my first week home, well to be honest it was a rollercoaster. Everyone says that the HSCT treatment itself is often a breeze, it’s the recovery that can be difficult.
Since I got home around midnight on Thursday night and at that time had been up for around 52 hours straight with just a couple of quick cat naps in that time frame, I was exhausted and really needing sleep. Unfortunately with jet lag and my body being used to Russian time, a 9 hour time difference, it took my body some getting used to a normal schedule again. The first few nights I could not sleep past 3:00-4:00am. I would wake up and just could not get back to sleep. So of course during the day time I was exhausted and trying to get used to life back home. It’s a big change going from a hospital room where you are only responsible for taking care of yourself to being at home with 2 younger kids that you were away from for a month that want to spend every waking moment with you. So it did take a couple days to get used to regular life again and figuring out the kids’ new schedules and all that good stuff.
The next few days were not too bad and I finally managed to catch up on sleep. I was able to sleep through the night and get at least 8 hours of sleep per night, only waking up once each night to pee. Usually when I’d wake up I’d have a hot flash and start sweating but other than that the nights were rather uneventful. During the day I’d have periodic hot flashes combined with sweats and then some chills, basically the same as when I was still in Russia, but nothing too bad. My energy level was pretty good and I was able to interact with my kids, cook meals, and live my normal life. I did get tired more quickly, but I know I am recovering from treatment and chemo and not really being active for a month. I tried to spend a bit of each day outside getting some fresh air and have found that to be really helpful with my energy level. The temps for my area are normally in the 90s this time of year and my first few days back were way below average and overcast so only in the 70s and low 80s so it was pleasant temps to come home too, especially since I was used to Russian temps which were about like that when I left.
Then when I hit the one week mark of being home the HSCT rollercoaster hit me hard and I had a fairly bad day. More fatigued, not much energy, arm weakness, more tingling and numbness in my hands and feet, some bone pain in my left arm, and a headache. It was a fairly miserable day and not the easiest when you have kids that want you to play with them and you just do not have the energy to do it. After HSCT you can still have flares of your MS symptoms and in the first 6 months that is often caused by the chemo still in your body. Even after all that you can still have flare-ups of old MS symptoms if you get overheated, do too much, are sick, etc. That usually goes away after a day or two once you get well rested, cooled down, etc. Unfortunately even after HSCT you still have the previous damage caused by the MS so those lesions can still cause the same problems they did before, just the symptoms are temporary and won’t last for days or weeks like they would prior to HSCT. Some people do see massive improvements after HSCT and that is due to the new immune system repairing damaged areas, usually newer lesions and brain lesions are the ones that see the most repair work done to them, but that doesn’t always happen. The goal of the treatment is to halt progression of the MS, any improvements are a bonus.
So at the one week mark of being home I ended up on a bad day, but after resting a bit in the evening and spending some time outside all my symptoms I had during the day went away and I felt great. So the day ended up on a good note.
So all in all my first week home went about how I expected it would. I knew I’d be exhausted the first few days, I mean after being up 52 hours straight, dealing with several flights, and numerous hours of layovers, anyone would be exhausted. Then there were good days and a bad day. So we’ll see what the next week holds in store for me.
But everyone always wants to know about improvements and side effects. My vision is still great, I still have light sensitivity when outside and have to wear sunglasses and I also have floaters when in the bright light, but my vision is still great, no blurriness, and my eyes are still focusing together, so that is a plus. Good vision really is something that people take for granted, seriously if you have good vision, appreciate it, seriously….Optic neuritis sucks and really is a miserable thing to deal with. My energy level is still pretty good, although I’m recovering from chemo so I don’t foresee it being amazing for quite some time. I am getting more feeling back in my hands, one day I actually had full feeling back in my hands, which was freaking amazing, seriously, I haven’t had that happen in over a year. It didn’t stick around, but I still do have a fair bit of feeling in them, so I have hope that in the future the feeling may come back completely, we will see. I’ll take what I get and some feeling is better than none, so can’t complain there. Now about the feeling in my feet. So I have had no feeling in my feet for over a year now and for a year prior to that I had very little feeling. As I said while still in Russia I was having horribly annoying intense tingling in my feet and was getting a bit of sensation back in them, which really did take a lot of getting used to, basically I had to kind of relearn how to walk as the sensation was so odd of being able to feel socks and shoes. Since I’ve been home I still have some tingling in them, but not nearly as intense as it was in Russia and I have gotten a bit more feeling back in them then I had in Russia, I tested this out by opting to step on the hot sidewalk to see if I could feel anything and I felt that it was burning hot. I realize this is not super exciting to the average person, but when you have no feeling at all, any feeling is quite amazing. Not sure how much feeling I will ever regain in my feet, that is caused by my nasty spinal lesion, so it’s hard to say how much repair can happen to that, but I do also know that nerves themselves are amazing things and can rewire themselves, so anything is possible. So we will see how that comes along in the future.
Side effects. Well I still have hot flashes and the sweats that go along with that along with occasional chills. I did have some minor bone pain one day that wasn’t too bad. I did have some irritation in my lungs in my first few days home, Dr. F had said that was due to coming off the steroids and that occurs in about 15% of all patients. That has gotten less and less as time goes by. He said it could take a few weeks to go away completely. Obviously I have the rollercoaster going on and so there will be good days and bad days. Then along with the rollercoaster I also do have the “chemo brain” going on at times, which is normal and experienced by most that undergo any type of chemo. But you have to remember chemo is a nasty toxin and it takes the body quite a while to get rid of it and it often causes some damage to nerves, especially in the brain, and if you have something like MS, it can make symptoms worse at times.
Also a the one week mark I opted to go get blood work done. Dr. F recommended doing that at 2 and 4 weeks, but I wanted to get it done at 1 week for my own records. My platelet counts were still holding strong about where they were in Russia. My hemoglobin is now in the normal range, although on the low-end still, but it’s gradually rising. Then my Leukocyte counts were at 4.0, which is lower than what I previously had, but in the US we use a completely different system to measure this than Russia, so here 3.8-11 is considered normal range, so comparing that to how the range was in Russia my counts have gone up a fair bit. I looked at bloodwork that I had done about a year ago and my counts were 6.5 which is considered fairly average for a person my age, so all in all it looks like they are doing what they are supposed to. I will have another blood draw at the 2 week mark. And I will say that I much prefer the blood draws in Russia, holy shit here they use gigantic ass needles, I forgot all about that, as in Russia they use a smaller type of needle. But apparently in the US the saying bigger is better also applies to needles used to draw blood. Amazingly I had a gal that was fairly skilled and she agreed to use my left arm, even though hospital protocol is to always try the right arm first, and she managed to get me in one stick. And since I have high platelet counts, no bruising. But I’ll take the needles in Russia any day.
So that’s my update for the 1 week mark, day +21. I will do another post at the 2 week mark, and then continue posts on a weekly basis unless something pressing comes up that I feel the need to blog about. I will actually be doing another blog post shortly about something that has come up in the time frame since the 1 week mark that I feel needs to be blogged about, so keep an eye out for that one.