Day +70! I’ve been home 8 weeks now and wow how time has really flown by, does not seem like it has been that long since I have left Russia. This week has really been rather boring in the way of updates. No doctors appointments and nothing super exciting to report, but I did promise people that I would do weekly updates for a year, so follow along if you so choose.
Firstly people keep inquiring about my hair growth, why I’m not sure, but apparently the topic of hair really does it for people. But since people want to know, it is starting to grow back a bit, which now my oldest kiddo likes to run her hands all over my head because it’s a fun texture. I foresee this happening for quite a while until it actually reaches a more normal length…. But this is how it’s looking now.
Overall how have I been doing? Well not too bad really. I posted last week about staying on Xarelto for the full 3 months but I did opt to stop taking it this past weekend. It was causing me some bleeding issues and while that alone is not a good thing, it also puts me at a much higher risk of infection which is not something I want to deal with either. So in weighing pros and cons, I opted to stop taking it. I am opting to take more fish oil and vitamin E twice a day to help keep my blood thinner. As I said before the blood thinner itself actually doesn’t do anything for breaking up the clot, the body itself has to deal with that. I also am making sure to try and exercise a bit each day and have went back to eating a much healthier diet.
I also decided to stop taking my anti-viral. Dr. F himself only says to take it a month, other doctors say 3 months, some say 12 months, many doctor’s doing this same treatment for cancer don’t even recommend being on it longer than the treatment itself. So really the “experts” really can’t agree on it. Why did I stop taking it? Well after I started taking the pills I got in the US I realized that some of my issues got a bit worse. I then read the very long list of side-effects from taking it, and realized that muscle pain, muscle tightness, headaches, jaw pain, dizziness, light-headedness, headaches, etc. are all listed as side-effects. So several days after I stopped taking the medication I felt much better. My head feels super clear now, muscle tightness has gotten much less, headaches are less, jaw pain is less, and overall I feel much better. In chatting with other veterans, many feel much better after they stop taking their anti-viral, so I’m guessing it has more of an effect on people then they actually realize. But then again, all meds have side effects and you don’t notice until you stop taking them. Back when I stopped taking Copaxone I noticed many things got much better and I would have had no idea that the medication caused all that until after I was off it for a while. At the 3 month mark and periodically after that I will do blood tests to check for EBV and CMV antibodies to ensure that they are non-detectible, if those numbers start to rise then I will start taking it again.
As for side-effects, nothing all too much related to the treatment itself. Some hot flashes occasionally. They are getting much less frequent, which is a good thing because they really aren’t pleasant. My triggers for those are being in hot temperatures for too long or after eating hot food, not spicy hot food, just warm food in general. And I’d like to blame my dry skin, especially on my feet, on the treatment itself, but unfortunately the climate where I live is to blame for that. My skin isn’t dry to the point of bleeding, but it is annoying, so I’ve been applying coconut oil on that at night to help. People all bitch about how miserable humidity is, but living in a dry climate with low humidity has a lot of downsides as well.
As for improvements, really that is staying about the same. I’m not expecting any major breakthroughs anytime soon. I’m sure others around me notice more improvements than I do myself. Right now I am more focused on trying to get back into shape, eating healthy, and getting back to living life. But I will post about any improvement I notice as they come along.
Anyways, in other news I’m trying to get my ass back into shape. While I never was horribly out of shape, I certainly am not in good shape now. Being in a hospital for a month and undergoing chemo really destroys muscle mass and strength, so I am working to rebuild that. It’s not a fast process either, it takes time. As much as I would love to go on a 5 mile hike, I physically cannot do that all at once. My goal is to reach 10,000 steps, about 5 miles, 3 times a week. I’d like to aim for that every single day, but it is freaking hot here, every day is in the high 90s or over 100 degrees, and while I am much better at tolerating hot temps, I cannot handle being in the direct sun for that long. Just doing daily household tasks and things around my property gives me around 6,000 steps, so still not a bad accomplishment each day. Unfortunately where I live it is not really safe to walk along the roads. Honestly people here suck at driving, I fail to understand how Idaho often ranks #1 in the country for best drivers, it’s a horrifying thought at how shitty people must drive elsewhere in the US, but almost every year 49 states rank lower than us, so hey at least we are #1 in something, we are #50 in pretty much everything else…. So in order to actually safely be able to walk somewhere I end up going into a town and walking around trails or parks or somewhere, which is why it only happens a couple of times a week.
On the plus side though, enough idiots are playing this stupid Pokemon Go game that it is quite entertaining watching people walk around staring at their phones running into trees, falling off sidewalks, etc. Good times. Especially when many of the people you see out and about playing this appear to have never left their moms’ basements in years….. But this game brings out an odd variety of people, you got the snooty popular high school kids, the typical pasty gamers who never see sunlight, families, trashy people, the whole nine yards. It brings back memories of when I worked at WinCo at night, you never knew really what you’d see! Although there are less drunk people playing Pokemon then you’d see out shopping at night. I am happy to see people actually outside and getting exercise, but it would be nicer to see people actually outside enjoying nature and the things around them as opposed to staring at their phones. But I think the city parks are getting more activity now than they have in years.
But I have managed to get out and about a few times to get my exercise. And in living near one of the BASE jumping capitals of the world, you never really know what you will see happen near the Perrine Bridge. In fact one night we stopped to watch a couple of BASE jumpers leap from the bridge and seen a man spreading out his parachute right next to the trail, soon he took off running towards the canyon edge, let out a loud squeal, and stuck his tongue out at everyone, and went over the canyon edge and landed at the landing site by the river, I managed to snap a blurry pic before he went over the edge. Ironically more people injure themselves or kill themselves doing stupid things by the canyon then actually BASE jumping here. Pokemon Go will claim a few lives I’m sure, it’s already caused a few injuries. Here’s a few pics from my excursions.
I also am getting back into eating healthier. Maybe I’ll do a blog post in the future about my diet pre-HSCT and what I am eating now and my thoughts about diet and MS in general.
So that about sums up my week. Nothing super exciting this week. I do have my 2 month doctor’s appointment next Tuesday and will hopefully be doing blood work for that either this Friday or Monday, so I actually have the results before my appointment this time around. Onwards and upwards!