Wow, I’ve been home for 3 weeks now, I can’t believe it, really Russia just seems so long ago, in some ways it feels like I was never there at all, I’ve gotten so used to being back home and into the normal day-to-day routine. But I also have a friend there now who just finished up stem cell harvest today and she has been posting pictures of the hospital grounds, procedures, and some of the staff there and it brings back all the memories so vividly. It’s odd but when you look back at pictures and see current pictures you really do miss the place. How on earth do you miss a hospital? I mean seriously, it’s a hospital…. But you really do have fond memories of the hospital, doctors, nurses, and everyone you meet there so it’s great to see pictures of other people undergoing the same life-changing treatment.
So how has this last week gone for me? Well it’s gone a whole hell of a lot better than last week that is for sure. Much less eventful and no doctor’s visits, urgent care visits, or ER visits, so hooray for me! I’m sure my insurance company feels the same way, ha! I’m not going to do a day by day play of this week because most days were pretty much the same for me and not really super eventful. Dr. F wanted me to do blood work at 2 weeks and 4 weeks, and so I did not feel it was necessary to do a blood draw at week 3, although I could have if I wanted too. But I decided to avoid another needle stick and will be getting that done again next Tuesday at the 4 week mark.
So most of the days this past week were pretty good days for me. I have had a fair bit of energy and have felt pretty good. I have tried to get outside every day for at least a bit and get some sunlight. I know it’s not good to get a ton of sunlight after undergoing chemo, but I do try to get at least 20 minutes of sun each day, I know vitamin D is super important for everyone. I don’t do the 20 minutes all at once, I try to do it in shorter spurts and it seems to work for me. A lot of people end up with weaker and thinner skin after undergoing the chemo and are more sensitive to sunlight, but so far for me that has not been an issue, my skin seems to be just like it was before I went to Russia. Although I never got dry skin my entire time during treatment or so far afterwards either. The only dry skin I have is on my hands, and that is only because I wash them so much and use hand sanitizer more frequently then I ever did before and that dries out the skin. But just like I have done before going to Russia I do wear something on my head when outside, either a bandana or a hat. I tan easily and stay darker than the average person year round, so my poor bald head is pretty white, so I make sure to keep it covered when outdoors. Although for the most part I am always wearing a bandana on my head even indoors, as my head tends to get cold, and with the ceiling fans going in the house because of the heat, I just cannot stand the air blowing on my head, I just am not into that sort of thing. But I own 57 bandanas and have only purchased 1 after getting home from Russia, so I do have a bandana for every occasion, ha! Why do I own do many bandanas? Well I’ve worked many jobs since high school that involved working in the great outdoors, many for government agencies that required me to wear a hard hat while working in the woods, so wearing bandanas under hard hats really helps with sweat. And then I’ve also worked in greenhouses and wearing a bandana just seemed to be the thing to do there, so over the years I’ve acquired many bandanas and I always browse the bandana rack at Walmart to see if I see any fun patterns that appeal to me. Some women collect shoes, I collect bandanas… But at least bandanas are super cheap and do not take up much room, and now I can wear a different bandana every day for almost 2 months straight, so you never know what my head will look like on any given day, I like to keep it interesting!
I only have had one down day in this past week and it was yesterday (Tuesday). I just did not have much energy and was much more fatigued and several of my former MS symptoms reared their angry head. Arm weakness, leg weakness, MS hug around the chest, and just not feeling with it. But once the later evening came around I was feeling pretty good and back to normal again, gotta love those damn MS symptoms always deciding what they want to do on their own, ugh. But I do think my down day may have had something to do with staying up later than normal the night before. We had went into town so my husband could exchange something with a friend of his and then they got distracted talking and we ended up getting home around 10:30pm, then still had to get the kids ready for bed, so I finally managed to get in bed by midnight and was exhausted at that time and then did not sleep well that night at all. So I think the lack of sleep really was causing some of the issues, but hard to say really. The whole rollercoaster thing is a real thing and that could be it as well, never really know.
So how is the DVT in my left jugular vein doing? Well honestly I have no idea what is actually going on in my vein and I won’t know that probably till closer to the 3 month mark when they do another ultrasound, such is life. But I can update on how my neck, face, and head are feeling in the past week. At the start of this week I still had more pain in the left side of my neck along with periodic headaches and some face pain, but as the week has progressed that has been less and less. In the last 3 days of the week I have only had periodic pain in my neck and occasionally a bit in my face, but not much in the way of headaches, and the pain has been much less than before and not really super noticeable and it doesn’t bother me. It’s still annoying when it pops up, but it’s something I can live with. So I am guessing that is a sign that the clot is breaking up a bit. The Xarelto doesn’t break the clot up, just prevents the clot from getting bigger and at the dose I’m on it’s supposed to try and convince the body to break up the clot itself, so I guess it’s doing its job. It’s expensive enough so it best be doing something!!!! So I have faith that over the next 3 months that I’m on this med that the clot will go away. Now with this medication at the start of this week it was giving me horrible acid reflux and heartburn, but that has gotten a bit better as the week has progressed and hasn’t been nearly as intense, which is a good thing. Ugh, it was getting super annoying there for a few days and I thought I may have to start taking an OTC med for that. But it does occasionally pop up randomly throughout the day, so it doesn’t seem to matter what I eat or drink it is going to pop up when it wants to, even water can trigger it sometimes.
So have I noticed any improvements over the past week. Well nothing super amazing to the outsider. I have noticed that when I walk I don’t have any weird tingling or aches in my legs. I mean it’s hard to describe to someone without MS, but before I had HSCT I could still walk normal most of the time minus some issues with my left leg, but when I would walk it would feel weird and not normal. It was like I was forcing myself to walk normal even though my body didn’t approve and so it would cause some slight aching and tingling in my legs. I noticed yesterday for the first time when I was walking that it wasn’t doing that anymore and for the first time in around 2 years my legs felt like they did pre-MS. And at my in-laws house when walking up the stairs 2 days ago while carrying my 18 month old I had no issues conquering the stairs without using the handrails! Now in the past I’ve always had to use the handrails or hug the wall, or if I would go up the stairs without using the handrail it would be a one step at a time ordeal, but I walked up like a normal person, an odd thing really. I’m not sure if this will stick around or not, but I am very appreciative of the small things and really enjoy all the little things because I know how fast things can change and go away, so I appreciate everything now that I didn’t have before. Everything else is how it was last week and nothing else super exciting to report. But I do know for those with MS or CIPD or other similar diseases that cause similar issues, it’s the small things like this that are important to mention.
Now onto the side-effects. I guess so far I’ve been lucky and haven’t really had any crazy side-effects. Mainly mine have just been hot flashes and then occasionally some chills, but I’m guessing that is because hormones are all out of whack. I’m still the odd-ball hoping for menopause, but we will see. I have had a bit of bone pain in my left arm and shoulder but nothing super intense and no desire to take any pain meds for it. I still think I have more of that in my left arm than in my right arm just because they did almost all of my stimulation shots in that arm. So nothing all too exciting to report for that either.
Now what else have I been up to in this past week at home. Well I supervised my hubby when he was planting tomatoes in the garden. I instructed him where everything needed to go. I normally am the gardener in the house, I usually plant everything and take care of the entire garden, so it is odd to see someone else do it all. And it really is annoying and frustrating because I love gardening and getting to play in the dirt, and would honestly love to feel the dirt squish between my toes and actually be able to feel the dirt with my hands again, and it’s difficult to stand aside and watch others do it. But I do know that I have to avoid that for at least 3 months, so no gardening for me this year. I’ve done a couple of trips into town to do some shopping, always wearing a mask, and not going during peak times, and I do try to avoid people. And then I am smart when it comes to shopping, as much as I do love shopping at thrift stores, I am avoiding them for a while, I know the stuff in them is not super clean and I also know that at least in my area many people who shop there are not the cleanest in general, so don’t want to take any chances of picking up anything there. I also finally managed to get some of the stuff hung up on the walls that I got in Russia, so making progress. All in all my life has been pretty boring, but I do live in Idaho in the country, so not a whole lot to do.
11 June 2016 was my 1 month stemmie birthday! I was a stem cell triplet, as my stem cells were re-infused the same day as a British gal and Norwegian guy. The other 2 ladies in my group got theirs back the next day. So just for the record I had to take a picture of myself on that day to document what my hair was looking like then, ha!
In other news, my friend that I mentioned in my last post is doing better and hopefully will make a full recovery and be able to go home sometime in the near future. So while I’m still spending a great deal of time thinking about her, at least I know things are looking up, so I’m not as worried now as I was back then, still worried, however things are looking more promising.
So all in all, that was my week. Nothing super exciting, which really during recovery is a good thing I think! Next week I will have my 4 week doctor’s appointment and blood work, so it should be a bit more exciting post. I do have some other posts that I do want to write as well, so we will see if I have the time to actually work on any of those. I’ve had some requests for a post about what I took to Russia, what I feel people should/should not take to Russia, what food items are available to buy in Russia, activities to do while in Russia, etc. Then I eventually plan to go through some of my older posts and modify how the pictures are on those, since as time went on, I figured out more and more how to actually use this whole blogger site.
So onwards and upwards to next week!