October 11th was my 5 month stemmie birthday! Most exciting part of it really is the fact that my hair is starting to really grow now. It’s about an inch long in most places and really is a mess. I mean there is no other way to describe it. The post-chemo hair is something that just cannot be explained unless you are dealing with it yourself or know someone who has dealt with it in the past. Your hair can come in patchy, grows at different lengths, can be an odd color, and often is somewhat curly, and just cannot be tamed. Many people opt to buzz cut their hair several times before they let it come back in. I however am just going to let mine go, I just wear a bandana in public because I can’t tame the hair. While I do still have a few places where the hair is still a bit thin, it’s starting to really come back in and it’s fairly even over most of my head, but it is a mess. It’s growing back the same color it was prior to HSCT, so no new hair color for me. But here’s the 5 month picture.
This week was really rather boring and uneventful for me. Most exciting part was that I had my follow-up MRI for my HSCT procedure on Wednesday the 12th. While I was going to do an MRI at the 6 month mark, I knew I’d be doing it a bit early because I needed to have it done prior to my neuro appointment in early November, and this was the time-frame that worked out for scheduling. Seriously booking a MRI appointment here is crazy, it often is booked up for 2-4 weeks, so being able to take a cancellation slot worked for me, even though it was at the 5 month mark rather than the 6 month mark. I know everyone recommends getting an MRI done on the exact same machine, but it worked out that I was getting mine done on the Mobile MRI this time around as opposed to the one in the building. Same brand of machine though. My last MRI done here was Feb/March 2015, so it’s been quite a while since I’ve had one done here. My MRI in Russia at the end of April showed about 10 more lesions than my one here last year, so I’m sure the results of this one will show new lesions from a year ago, but the goal is to not have any enhancing lesions.
My MRI was done of my brain and c-spine with and without contrast, my insurance will not cover more of the spine for MS patients, but I’m fine with that as I really did not have any lesions lower on my spine, most of mine are all on the c-spine. So from start to finish it was about 1 hour and 20 minutes. The machines they use here are not as fancy and high-tech as the one in Russia, so I doubt this MRI will show as many lesions as the one in Russia did anyways. But I got in almost on time for my MRI, really quite amazing for this hospital. I got to walk outside the hospital and go into the semi trailer where they have the Mobile MRI unit. Good thing I’m not claustrophobic, because there is not a lot of space in there. Ended up with one of the same MRI techs that I had last year and he is a happy and entertaining guy so I don’t mind him. I did get a bit nauseous when they inserted the contrast dye, but some focused breathing managed to get that feeling to pass. After it was all said and done the tech complimented me on my ability to stay super still the entire time. I guess most people really thrash around and cause problems for them. I do not have the results of the MRI yet, supposed to get the radiologist report later this week, but could be next week before I get that. Hard to say really. The hospital just switched to a whole new records system on Oct. 1st called the MyChart system, so everyone is trying to figure out how to use it and it’s a mess. But hopefully they eventually post the results or that my GP gets back to me with the report. The report is going to both my GP and neuro.
The other highlight of my week is the fact that I managed to conquer the monkey bars. As I mentioned in an earlier post, one of my goals after HSCT was to be able to get across a set of monkey bars. Pre-HSCT I had no arm strength at all and no grip strength. I literally could not hang onto the bars, I would crash to the ground, and then my legs couldn’t really support me so I’d end up on my knees, not a pretty sight. But when we were at a playground early in the week with the kiddos I decided to try to get across them, and I succeeded, so I continued to do it more and made it across 5 times. Most awesome feeling ever. Obviously not super exciting for a healthy person, but it was quite an accomplishment. I’m still working on arm strength and leg strength, but making progress all the time. I also have managed to be able to run again as well, I probably appear quite uncoordinated while doing it, but I can do it, so am working on longer distances all the time. Now I did post a crappy cell phone video of me going across the monkey bars on my HSCT facebook page, but I cannot post it here, because I have a free blog and you can only post videos if you pay. Here is the link to my page, Cat’s HSCT Journey, you can find the video on there if you are so inclined to watch it: https://www.facebook.com/catshsctjourney/
As for the rest of my week, I think I’m recovering well from the car accident. Still have some neck stiffness, but stretching and massaging seems to be helping that. I have managed to meditate almost every day, try to do some exercising every day, and the diet is improving. Hoping this next week to really improve on that. This is the time of the year that I am planning to stay at home a lot more and only venture into town when I need to do some grocery shopping and then it will be in the early morning hours or later at night when crowds are smaller. I really try to avoid most people in the fall and winter months because it seems like everyone is sick this time of year, and people really are disgusting. Nobody seems to cover their mouths when they cough and then they touch everything with their germy hands and I would prefer to not get sick. Every year about this time we also have a huge whooping cough epidemic go through the area, so just waiting for that to happen this year as well. Even though almost everyone in the region is vaccinated for that, the strain that occurs here isn’t prevented by the vaccine, so when it hits schools, it gets bad, and then parents drag their sick children with them when they are in town, and it’s just disgusting. I worked retail for a few years, I’ve seen my fair share of sick people and it always disgusts me at their lack of respect for others, it’s like their goal is to infect everyone else. So I try to avoid crowds in general this time of year, but really plan to avoid them this year just because my immune system is lower.
Side effects and improvements. Well my arm strength and leg strength has really improved over the past few months. I do have some older MS symptoms that have popped up recently, which is most likely due to the stress of the accident or because of the weather fluctuations. But they are old symptoms from existing damage and nothing to be concerned about. Like I said before, old symptoms will still pop up when you are sick, after traumatic events, weather changes, etc. Mainly just a bit more numbness in my fingers and feet, some leg stiffness, and then some tingling/pins and needles around my stomach and back area. All things I’ve had before and things that seem to happen in the fall/winter when the weather changes, common amongst HSCT veterans as well, damn weather really messes with your body when it comes to old MS symptoms, for some people it’s the heat, others it’s the cold. Unfortunately until they find a way to rebuild myelin you are stuck with existing damage unless your body decides to heal itself. But I can’t complain, the improvements are amazing.
So that was my week, nothing super exciting to discuss. Hopefully next week I’ll have the results of my MRI to discuss. Until then, I’ll be trying to live a healthy lifestyle.