I’m starting out this blog post on a sad note. Most in the HSCT community, especially in the Russia group, know that a wonderful woman undergoing HSCT treatment passed away in Russia this past month. Everyone undergoing HSCT knows the risks involved, there is a risk of death, odds are around 1 in 250 now, less risk of death than on certain DMDs. We all agree to take this risk and do so willingly, but nobody expects to be the one that passes away from treatment. The biggest risk of death with HSCT is infection during isolation, no immune system makes you super prone to catching anything, and basically anything can kill you at that point in time. I have heard there have been deaths in India recently tied to infections, but the lady who passed in Russia did not pass from an infection picked up in isolation, it was something that I don’t think many people considered could happen. From what people have posted it appears she had a severe reaction to the chemo drug that subsided a bit and then got really bad once she received her stem cells back and then even with a lot of hospital care, she passed away from that reaction. I don’t know all the specific details, I’m just going on what has been posted, but it is completely tragic. I personally did not know this lady, I was not friends with her on facebook, although I am friends with her stemmie sister so I was watching their journey through my friend. But this lady followed my HSCT journey as well as that of my stemmie sisters who had facebook pages dedicated to their journeys, we were the first group that was really super active about posting about the whole HSCT experience so we had a lot of people following us. Even though many of us did not know this wonderful lady personally, her death has really affected all of us Russia HSCT veterans. It is hard to describe to someone who hasn’t been through the treatment, but it really puts life into perspective. It makes you appreciate life and realize that many things could have gone wrong but didn’t. It’s really an odd set of emotions to feel, one of my stemmie sisters expressed the same feelings as I did. It’s just hard to describe and very emotional. Even harder seeing pictures of the lady pre-treatment and during treatment looking so happy only to having it end that way. While the risk of death is not super high, it can unfortunately happen and has happened at every facility out there, either during treatment or after someone has returned home. But I am keeping the lady who passed away in my thoughts and sending her family and friends lots of love and good vibes. She was a fighter to the end. Please keep her friends and family in your thoughts or prayers.
After this situation rocked the HSCT world this past month it really seems odd to continue on writing a blog post talking about my life after HSCT and how I am doing, when others are suffering so much at this time. But I did promise to write on a monthly increment so here goes.
How am I doing at the 11 month mark? So far so good. So in my last update we all found out that I am working again. My job isn’t the easiest but I do enjoy it, well as much as one can enjoy a job I suppose. Unlike a lot of healthy people who work, I at least enjoy the fact that I am able to work again and appreciate all the things I can do. Hey it’s the simple things in life right? But I’ve been working over a month now and so far things are going well. It appears that my average step count is around 20,000 each day while at work, which for me is around 8-8.5 miles a day. Some slow days at work I end up walking around 7.5 miles, busy days can be up to 10 miles. I do feel all the walking and lifting at work are helping with my recovery. I tend to feel much better overall, thinking much clearer, overall feeling better, and I have been sleeping much better as well. So all in all can’t complain too much about all that.
One facebook friend of mine asked how my menopausal/peri-menopausal symptoms were coming along. They are still there, but not nearly as extreme as they were prior. A few days prior to my period each month I get some hot flashes but mainly chills where I just feel cold all the time and I sleep horribly at that time. Same right around when I ovulate. All the whole PMS time brings about old MS symptoms, although that is something that seems really common with those with MS, the hormone shifts at certain times of the month bring back old symptoms. Damn existing damage never goes away. At least I know that it will go away after a few days. Unpleasant but something I can live with.
Overall though this past month, I’ve felt really good and can’t complain at all. It seems like where I am now is probably where I am going to stay as for improvements, although you never do really know. Biggest issue that really still sticks around and that does annoy me quite a bit, is that if someone talks to me and asks me a complex question, it does tend to take me a couple of seconds to process it and come up with an answer, as opposed to pre-MS when I could just start talking right away. Will that improve in the future? Hard to say, but it’s obviously caused by a brain lesion, and while some damage will repair itself, you never know if it will happen or not. But otherwise I am doing good and just trying to enjoy life.
Since I started working I actually have worked more 40 hour weeks then I expected to, which does really limit my free time and other activities that I like to do. But since it’s spring and the weather is somewhat cooperative at the moment, I have been trying to get stuff done in my yard. I’ve worked on some small landscaping projects, still working on the biggest one right now. As well as starting seeds for my garden and all that good stuff. Then of course most of my free time is spent with my family just hanging out and spending time with my kids. Time with the kids is by far the most important thing of all. We’ve done some walking around on local trails as well. Here’s some random pics from my last month, some from our walks, others from my landscaping/planting I’ve been doing.
And as per my usual blog post, how I am doing with my diet, exercise, meditation and yoga? Well considering my schedule now, I’m not doing all too bad. Yoga isn’t really happening. I just can’t get it done in the morning because the kids are up and trying to do yoga with a toddler crawling all over you really isn’t the most practical thing. I do try to do some meditation each night before bed. Exercise mainly happens at work, I walk around 8 miles each day I work and I do lift a lot of heavy things, so I am getting my work-out in that way. On my days off I work around the yard and try to keep up my activity level and I will say I do think that has made me feel much better. The most exercise I get, the more alert I feel and I sleep much better too. As for diet, the diet always gets me…. But I have been eating much healthier this past month than I have prior to that. I tend to work afternoons/evenings, so I often make food in the crock-pot for the family that they can eat, then I also will have left-overs to take to work the next day. I’ve been managing to incorporate a green smoothie into my diet most days before work and also do try to eat some greens with my actual lunch at work. So progress. I am focusing more on diet this next month.
Other than that my month has been pretty boring, just living life like everyone else. My hair has grown a bit more, but still really is a curly mess. It is straightening more as it grows out from the head, hard to say on length of it at the moment, there are sections that are over 5″ long and others places where it is still around 4″ long, some even is around 6″ long, so hard to get an accurate measurement, especially when it is so curly. But here are some pictures of the hair.
Next month will be the 1 year mark! I will do a much longer blog post that goes into more details on MS symptoms and everything else, similar to what I did at the 6 month mark. Onwards and upwards!