It's late, but here's a post to re-cap the day. Today was my first day back at the SCCA for regular clinic visits now that I'm out of the hospital.
The day started early at 7 am with a scheduled blood draw. Then I had an MRI of my pelvis which is part of the clinical trial for the Mesenchymal stem cells I'm receiving, those special stem cells that actually can regenerate tissue (with my strange red eyes and automatic-tissue regrowing cells, I feel like one of the X-Men). The purpose of the MRI is to establish a base line to make sure there is no abnormal tissue growth. In all of the 850 trials for these cells, there was one instance of a guy who grew bone tissue out of his lungs! It was a weird case, and he already had bone problems, but because of that one instance they now schedule MRIs now just to be safe. The MRI wasn't a big deal, but it was *really* loud. They provide you with headphones, but it didn't help much. It was like having a fire engine right next to your head going ENNNNNHH ENNNNNHH ENNNNNHH or BUH BUH BUH BUH BUH BUH BUH BUH, over and over for half an hour. They had piped in Jack Johnson over the headphones, and I'm not sure I'll ever be able to listen to Jack Johnson the same way again.
After the MRI I met with the clinician, who couldn't believe I was doing so well the day after I got out of the hospital and gave me a gold star, then it was off to see the snot guy to provide some snot, then it was over to the nutritionist who also couldn't believe I was doing so well and gave me another gold star. Because things are looking good, I'm only scheduled for SCCA visits twice a week, which is great. All this really boosted my self-confidence, so after I got home I celebrated by walking about 5 miles around the neighborhood and over to Cloud City, one of my favorite coffee shops. The walk felt great, though I had to lather up with lots of sunblock to prevent GVHD issues. I even ordered a short latte and a broccoli quiche, and the coffee actually tasted pretty good. I've been drinking a lot of milk lately, which helps with the calcium and vitamin D that are being sucked from my body by the steroids, so I figured a short latte was basically just more milk (normally I get a double short), and I was curious to see how my stomach would handle the coffee. It was a nice treat. I wore my sunglasses inside when ordering so as not to freak out the baristas, but it was nice to be around normal people for a change, normal people who aren't sick I mean. I still need to avoid crowds, but there are a lot of places I can go. My scheduler, Troy, at the SCCA said he sees people with my bloody eyes all the time, and calls them Gambit Eyes, after the character from the X-Men, so we joked about that for a bit and I didn't feel so bad. My face is puffy and my tongue is totally white now, with the new taste buds growing in, so when I stick out my tongue and open my eyes wide I look pretty freaky.
After my walk I did a bunch of chores around the house to help out Johanna, and it felt good to get back in the swing of things. We hooked up my portable IV pump which provides me with more hydration and some missing minerals like magnesium and potassium that are getting sucked away by the medications, and then watched Lost with my sister and Brian. It was nice to watch TV in HD again on a big screen after watching it on the little TVs in the hospital. The IV pump has a little backpack that goes with it, and I can hear it whirring away by the bed as I write this. If I can hit my goal of drinking 4 liters of water a day, they may taper me off the IV hydration early. That would be awesome.
Tomorrow I'll be walking with Simon around the Arboretum, so that should be fun. I'm looking forward to getting my muscles back in shape, since the medications I'm on are actually promoting bone and muscle loss, so lots of exercise and calcium will be good.
I probably won't be posting as often, since things are starting to settle down a bit, but I'll keep updating as interesting things come up. Ciao!