26 June will be a full month of actually being at home, but as of today 22 June is 4 weeks since leaving Russia. For me time has flown by being at home, seriously… Obviously what people say is true, the older you get, the faster time goes by and now I feel old… While my time in Russia seemed to go so fast I think time at home has gone faster. Although I think having young kids in the house helps with the time flying by, between making meals and doing activities with the kids before you know it the entire day has gone by.
So how was my 4th week of being at home? Well not too bad actually, I think it was my best week so far. I only had one day when I was a bit out of it, not feeling horrible, but not feeling 100% and I think it was mainly due to weather. That day was hot, 100+F, but it wasn’t really the heat that was the issue, the weather went from super hot to having some pressure system come in with high winds and then it dropped the temp around 30 degrees in a matter of around 30 minutes. Extreme temperature changes have always been my major downfall way more than heat and in my area they happen a lot. So my day-to-day life hasn’t been super exciting to the point where I need to do a rundown of the events of each day. I don’t need to bore you with my daily diet or life events, but will cover the highlights of the week.
So as I said above my week hasn’t been too bad, I actually felt pretty good the whole week. My energy level has been pretty high, pre-HSCT levels, and on many days almost like a normal person. Well maybe not a regular normal person in this area, many people here just sit around on their ass and play video games all day and eat junk food, I prefer to be active. But those with MS know a bit more what I mean, the amount of energy you would have if you did not have MS. I mean obviously I’m not planning to take up marathon running anytime soon, I’d completely hurt myself if I did that. Which for a lot of people after having HSCT, energy level is one of the first things they say comes back in some way, shape, or form. While lack of energy was not a huge factor for me pre-HSCT, it was a major problem for me in the hot summer months. Like I’ve said before here it gets hot in the summer, most days are 90+F and some days would be a struggle to function. So far I haven’t really had any issues with the heat. Of course I’m not out there sun-bathing, but being able to even function outside or in the house in the hot temps is a nice change of pace. I know for some people the chemo tends to cause them to burn super-easily when being in the sun, that does not seem to be a problem for me either, although my skin tans really easily and I rarely ever burn. I’m not spending hours in the sun, but I do try to get my 15-20 minutes of sun every day and that is not a problem for me at all. I do however protect my bald white head from the sun, don’t want it to get burned.
I spent most of this week just hanging out around my place, either inside the house or outside. I do live in the country so that does offer me a bit more space to actually get outside and enjoy the fresh air, although this past week has had a fair bit of wind, which I do not like in general, but it really kicks up a lot of dust, so I avoid being outside when it’s super dusty so I don’t end up inhaling all sorts of things, and when it is windy and I go outside I do opt to wear a mask. I did supervise, aka order around, my hubby when he was finishing planting up some stuff in one of our garden plots. Normally I grow a huge garden, this year it’s a lot smaller and just has the basic stuff, this plot has tomatoes, peppers, summer squash, and greens, nothing super exciting. Not gonna lie it is freaking hard for me to avoid working in the garden. Being outside and playing in the dirt is just my thing, I’m worse than a child for wanting to play in the dirt, so not being able to garden for 3 months is pretty brutal, but I have 1 month down, just 2 to go! But really I look forward to eating fresh veggies from the garden! Although a good harvest means canning lots of stuff, mainly tomatoes, which last year was brutal for me because of the heat involved with that, but am hoping this year it’s much more pleasant. I call my pressure canner, The Beast, and it is amazing, does 14 quarts at once! Don’t worry if there is a good harvest that involves canning in September or so, I’ll be sure to take pictures of my sexy pressure canner, it really is amazing. I also am somewhat of a hippie and use Tattler reusable canning lids, ha! Which they do work and truly are amazing….I’ve been using the same lids and rings since 2011 and they are still going strong!
I did take a few trips into town as well to go shopping, always wearing my mask. The plus side is that it’s summer and even though the germy children of the area are not in school right now, it’s not cold/flu season so nobody is coughing all over stuff. Really my shopping experience is pretty boring compared to most people, I mainly just buy groceries and then occasionally other household products, I’m really quite boring. I have my set routine at where I shop, WinCo, Costco, and Walmart. My shopping would be so much easier if the WinCo in my area would actually sell more organic produce and products, but they don’t, so I end up at Costco for my greens and other misc. products, then surprisingly Walmart has an okay selection of organic produce and products so I end up getting some stuff there as well. The rest of the stores in my area are too overpriced and have rude employees so I refuse to shop there. Honestly even though I try to buy organic and non-GMO because of pesticide/herbicide residue and how that can cause issues in people with autoimmune conditions, I will opt to buy certain things conventionally grown even though it is available in organic form in certain stores in town, just because the employees are so freaking rude at those stores, and for me bad customer service is unacceptable and I will not shop there. Then one may ask, why the hell do you still shop at Walmart then since they are known for that. Well quite frankly if I am going to have bad customer service, I’m at least going to go to a store that I get the best prices on things, I’m cheap, I shop where things are cheapest. In my area of the US it’s not like there are small stores that sell basic things, it’s all giant stores, so you gotta pick and choose where to shop. And honestly at the moment for random household products, Walmart actually sells the most products that are made in the USA shockingly, and I will pay more for a product if it is made in the USA as opposed to being made in China. But dammit WinCo, start selling more freaking organic stuff!!!!! Would make my shopping trips so much easier.
So on the HSCT front, I guess my excitement for the week was my 4 week check-up and blood work that was done yesterday, got my blood work results back this morning. My check-up with my family doctor/GP was pretty much normal, nothing super exciting there, except for my encounter with his nurse. Now having gone to this doctor for a while now, both for myself and kids, I have always dealt with the same nurse, wonderful gal who is friendly and great with kids. Yesterday however I encountered one who must have been filling in for the day, never seen her before, although my hubby has encountered her before there, so she must be the fill-in for this clinic. While I could do a whole blog post on this encounter and how ditzy the gal was and all that goes along with that, I’ll refrain myself and behave. But needless to say for the usual temp, blood pressure, heart rate, and questions it took well over 10 minutes and I was stuck with the damn finger sensor on my finger forever… But the gal was fascinated with my blood pressure, she just kept telling me how amazing it was compared to almost everyone else she sees there. And she was so impressed with how calm I was during the whole blood pressure taking process. So there you have it, I have absolutely amazing blood pressure. I feel like I should have at least got rewarded with a sticker for my accomplishments, in fact I should have asked the doctor before I left for one, I’m sure he’d have given me one, he has rolls of them for the kids. I think one featuring the characters from Frozen stuck to my shirt would have made my day much better, ha!
But my actual check-up with the doctor went about normal. He had a NP trainee from I’m guessing the local community college nursing program with him sitting in on my appointment, can’t say I’ve dealt with that recently, I know you can opt to not allow them to sit-in on your appointments, but hell I’m a rarity in this area, so figured the gal might learn something with me. In my area of the state I’m one of 3 people who have undergone HSCT for an autoimmune condition, first one for MS and first one to do so not in the US clinical trials, so not many people have encountered someone like me. So first he told the NP lady all about my DVT in my neck, how it’s not common, there really isn’t a standard protocol for treatment for it, and discussed how I was getting blood thinners for 3 months as per recommendations, then he turned his attention to me to see how that was going. Then we discussed how I was doing with my recovery and all that good stuff, he explained to the NP lady more about all that, then we discussed my blood work, and then I was on my way with my paperwork to go get my blood draw. I’ll be seeing him again in a little over a month for a check-up, blood draw, and to get a refill prescription for my Xarelto. Here’s a pic of me waiting in the room for the doctor, and that day I was rocking a stunning neon tie-dye bandana….
After that I went into the larger town near me to get my blood drawn. I really pondered which place to go to for my blood draw as I was not a fan of the needles they used at the location I went to last time. But I decided to stick with the same place as last time just because I figured I’d have less of a wait time, and it was an excellent choice on my part. Literally I was sitting there less than 3 minutes before I got called in and had my blood drawn. It was the same gal that did my last blood draw but obviously they ran out of the other style of needles, cause it was back to using the giant needles again. Which I have decided I much prefer over the style where the needle snaps back. She went with my left arm again and got my vein on the first attempt. Then like the last several blood draws she used tape to attach the gauze to my arm. I just don’t understand the whole using tape shit, honestly. Because I’m on blood thinners and I have lower platelets this week, it took quite a while to get the bleeding fully stopped this time, I had to keep applying pressure to my gauze/tape for about 10 minutes until the bleeding stopped. But the past tapings have managed to rip all the hair off my arm there, so the tape removal wasn’t too bad this time. But the whole process took 8 minutes from start to finish, was really rather impressed, thought for sure I’d be stuck sitting there for at least 30 minutes. Some pics from that experience.
So I got my blood work results back this morning, they actually posted online on my hospital/clinic’s portal website a little before 8:00am this morning. As soon as I got them back I attached them to an email to Dr. Fedorenko and sent it off. I heard back from Dr. F in about an hour, even with the 9 hour time difference. The man always responds super fast, quite nice. He said my blood work looked great just like it is supposed to, so he has me going back in for another check-up and blood work in about a month. Unless of course I start feeling bad or for some other reason, then he would want me to go back in and get more blood work done. So my levels are high enough that I can now go out in public without a mask, except in super crowded places and I’m cleared for all normal activities and exercise, no need to fear though, I don’t plan to take up marathon running or anything crazy anytime soon!
But for those that are curious about my numbers, my Leukocyte count is now 6.0, up from 5.9 two weeks ago. So it is starting to level out a little bit which is normal. Just for the record, 3.8-11.0 is the normal range in the USA, and my pre-HSCT count was 6.5. It can take up to a year or longer to get completely back to what your normal range was pre-HSCT, some people take up to 2 years to get back to the normal range, and then as WBCs die-off and new ones are created the number can fluctuate during that time, so in the future my numbers could be lower than that or higher. And then my Lymphocyte count is 0.64, which is up from 0.51 two weeks ago. The low-end of normal is 1.4 for that and like the Leukocyte counts, it can take 1-2 years until that number gets back up to the normal range. So all in all I’m right where I should be. My other numbers all look good and are in range. My platelet count is now at 200 which is down quite a bit but still in the normal range, some of that is because of my blood thinners and then also because of my diet, I’ve been eating foods to try and help keep my blood thinner to help break up my DVT. Then my glucose level has been a bit above the high-end of normal since I’ve been home, but has been dropping a bit each week. This is common after HSCT because of all the IV steroids given and usually gets back to normal after 3-4 months.
So now that I covered all the important info about blood work, lets talk about side-effects. All in all I’ve been pretty lucky when it comes to side-effects, I really haven’t had much of any. I do still have regular hot flashes both during the day and night, and once in a while I have minor bone pain in my left shoulder and left arm, but for the most part that is it. I have had acid reflux, dry throat, and a sore throat because of the acid reflux which some people have after HSCT because of the chemo, although mine all started after the Xarelto, and it’s a common side effect of that medication, so I am guessing mine is attributed to that. Then the past few days my eyes have felt dry, which can be a side effect from chemo or from Xarelto, so it’s a toss-up on what is causing that. But can’t complain, nothing too bad.
Now my endometriosis pain has been worse lately. But I do also know that the chemo from the HSCT makes your hormones all out of whack afterwards for quite a while, can cause menopause, or psuedo-mesopause. So when hormones are out of whack that means if you have endometriosis, the pain that goes along with it can get worse because your hormones are constantly fluctuating. For me the pain isn’t constant, it comes and goes. Some days I have no pain, other days it’s once or twice a day, other days it sticks around for a lot of the day. I have noticed that on days when I am less active and on days when I have more hot flashes the pain shows up and sticks around longer.
Now onto improvements. My energy level is definitely back to pre-HSCT levels at all times and on most days it is better than that, I’m almost back to feeling like a regular healthy person. My vision has stuck around and I am still seeing clearly out of both eyes and they still focus together, still have floaters when in the bright sun outside and still have to wear sunglasses when out in the sun, but can’t complain. I have gotten most of the feeling back in my hands, but I do still struggle with doing tasks with my fingers, but we’ll see what the future holds in store for that. I do have more feeling in my feet as well, nothing all too amazing to report there, but I can feel things with my feet, so progress there as well. My balance has gotten better as well. I know that recovery is a roller-coaster so all this can come and go over time, but for now I’ll take what I can get and hope it sticks around.
That’s all from here, will do another weekly update next week!