So this week was really rather boring compared to last week, I avoided doctors all week long, impressive really given my recent track record… This past week did involve a US holiday though, Independence Day, aka the 4th of July. For those of you outside of the USA, we celebrate when we kicked the Brits’ ass and won our independence, so we celebrate with random festivities, beer drinking, BBQs, and setting off fireworks. So basically people go to parades to get candy, the fireworks cause a lot of fires, people eat way too much unhealthy food, and many people get DUIs. We really didn’t do anything super exciting for the holiday, my local town celebrates the 4th in a big way with their festivities known as Sagebrush Days, why sagebrush I have no idea, but they incorporate celebrating trout into the event as well, so it’s a win-win. Sagebrush + Trout +Living in the Desert = What the Hell???? The local town is known as the trout capital of the world since they raise more farmed trout then anywhere else in the world, so they like to incorporate trout into every event the town celebrates, and why they celebrate the god-awful horrible plant known as sagebrush, I have no idea. And the town attaches sagebrush to everything in town to celebrate, it’s very bizarre, here’s some pictures to show this odd phenomenon.
We didn’t go to the parade, because really all small town parades are the same in Idaho, seriously they are…. They normally consist of lots of random horse groups, classic cars, parade floats involving every church in the area including about 10 different LDS/mormon wards, every fire truck in town and surrounding towns, lots of local police and sheriff cars, the local ambulance, school floats, FFA, 4H, VFW, American Legion, boy scouts, girl scouts, 4-wheelers, and lots of people acting like they are really patriotic. It’s the one time of the year when people wear red, white and blue clothing, usually featuring the USA flag and acting like they really care about the country, when most people don’t, good times… Really we didn’t celebrate any festivities in my local town nor did we attend any fireworks shows, my pathetic home town always put on an amazing show and it really is hard to beat that. Instead we had a BBQ with my in-laws, but I did get a bit festive with my bandana, remember I own 57 of them, so of course I have some that are patriotic, ha!
But enough about holidays, now back to the real focus of my blog post which is supposed to discuss my HSCT recovery. So I’m on week 6 of being home and I’m +56 days, so almost 2 months since getting my stem cells re-infused into my body. I honestly can’t believe it was so long ago, time has really flown by. I’m not getting any blood work done until the end of this month unless something comes up. Healthwise I’ve felt pretty good this past week. I’ve had normal energy levels and other than some fatigue occasionally in the middle of the day, life has been about how it was pre-HSCT. I have been dealing with off and on spasticity in my left upper back and left side of my neck and the issues that go along with that, but it hasn’t been too horrible the past week. Although now I am really questioning if that is MS related or if it’s a side-effect of my Xarelto, as all that can be a side-effect of that medication and in looking at my symptom log all that started the day I switched to taking the 20mg once a day and that issue pops up every day almost 30 minutes after I pop that pill in the morning and subsides in the evening and doesn’t affect me at all at night.
But since I am speaking of Xarelto, let’s discuss the horrible acid reflux it has caused me the entire time I’ve been on it. So acid reflux is a known side effect of Xarelto, and in reading forums and searching online it seems to be a pretty freaking common side effect of it as well that affects a lot more people than they say it does, no surprise. So the acid reflux for me isn’t just after certain foods, it is constant, my whole digestive tract hurts and I have a constant sore throat because of it. I have taken generic Prilosec for this for almost 2 weeks now and it does absolutely nothing for it, the ingredient in that is the same as we were given in Moscow, so I know it works for me, just not for this type of reflux apparently. So I’m stopping the Xarelto as I am sick and tired of the pain that goes along with the acid reflux and I don’t want it damaging my digestive tract. I sent my doctor a message today to see if he could order me up an ultrasound of my jugular to see if the clot is still there, has gotten smaller, or disappeared. I will be getting that ultrasound done this Friday. But regardless I am stopping the Xarelto and if need be I will try a different blood thinner, but certain supplements work about as good as blood thinners, so that could be a possibility as well depending on the results of the ultrasound. But in researching Xarelto more, some of its listed side effects are muscle aches, muscle tightness, muscle spasms, headaches, neck pain, jaw pain, ear pain. And like I said above all my spasticity issues started right when I switched to the 20mg dose once a day, so I am wondering now if that could all be attributed to the medication as well. Guess we will find out after I stop it. From what I have gathered the thinning effects of the blood wear off in 24 hours after stopping, but it can take several days for it to get completely out of your system. So I’m hoping that medication is responsible for all of that, would be nice to ditch the spasticity.
But let’s talk side effects. Like last week it’s been a pretty boring week for side effects, which is good for me, bad for an exciting blog post. Really it’s just occasional hot flashes and even then they are getting less frequent. For the past week I haven’t had any at night at all, unless I physically get out of bed to use the bathroom, then I usually have one, otherwise if I stay in bed all night, no hot flashes. And usually just about 3-4 all day long, which for a while I was averaging about 1 every 1-2 hours, so it’s quite the improvement. They aren’t as intense anymore either. Now everyone always posts about their chemo lines, which I guess can be listed as a side effect. If you undergo chemo you get these white lines on your nails that gradually grow out, for most people it takes a few months for them to grow out completely, mine finally are pretty visible on my fingers, most of the ones on my toes have already grown out completely, my toe nails always have grown really fast, it’s ridiculous really. Mine aren’t nearly as impressive as many I have seen before, but here’s a pic of mine.
How about improvements. I CAN RUN!!!! Well for a short distance and I’m sure it is freaking entertaining as hell for anyone watching me, but I can run! I mean I have to be super careful to not faceplant, but I can actually run for a short distance. This is something that I will work on more later, not planning to push it, I’d rather regain more strength before I attempt this further. Running has never been a passion of mine, so I don’t plan to run races, but it’s good to know I can do it in case of a zombie apocalypse, ha. And I also have almost full feeling back in my hands and fingers, still not full dexterity with trying to do certain tasks with my fingers like tying shoe laces or things like that, but hey being able to feel textures and other stuff is pretty freaking awesome. I’m getting more feeling back in my feet and toes as well. Last night I actually felt a small elm seed bug crawl across the top of my toe! Not super exciting for a normal person, but amazing for me, haven’t been able to feel things like that in over 2 years! Normally when I think a bug is crawling on my toes or feet it’s just nerves acting up, but this time I actually felt a bug, amazing. Not really sure how much more progress my feet may see, but some feeling is better than none at all. Everything else is about the same as before.
Other random things. Still nothing in the way of hair growth, still mostly bald except for the random fuzz I’ve had since leaving Russia. 3 months after returning home seems to be the average time for the hair to start coming back in, we will see. Until then I’m kinda enjoying the lack of hair during these hot summer months. Still haven’t lost arm or leg hair. Now my eyebrows and eyelashes are starting to grow back in and seem to be firmly attached, I know they could fall out again several times over the next few months, but we’ll see. I’ve also managed to gain about 3 pounds in the past week, I was losing weight for a while after I got home and I was borderline for being classified as underweight and while it’s still in my “normal range” I prefer to be at a slighter higher weight so I have been trying to gain a bit of weight back.
Now next week’s blog will be more exciting, I have my first neurology appointment since being home…. Not really sure how that will go. Then I also have my neck ultrasound later this week. So until next time, enjoy another sunset picture from my house.