My mantra this week has been something along the lines of, “keep moving forward, one step at a time.” It’s been a very good reminder to just hang in there, that even if it doesn’t seem like your body will ever feel better, one day it will.
Friday was generally positive. I was up early, even managing tea and a full breakfast before my lab draw. Walking into Dr. W’s office on time and not my typical 5-10 minutes late was nice, and I let my nurses know I would be waiting outside of phlebotomy for results. I conferred briefly with Dr. W – yes, I’m thankfully feeling better, headaches are greatly diminished, GI system is “eh”, fatigue is more manageable, etc. Before even seeing my Creatinine results, he asked if I would be interested in receiving fluids and I figured – why not? Anything I can do to assist my body at this point, is a good thing. And while I’m still drinking my 3-4L of fluids per day, it seems my Kidneys as of late, have just been having a tough go of it.
Later, while hooked up to the IV, my Creatinine came back at 1.42. Certainly, way more elevated that where I need to be; but I sighed a HUGE sigh of relief that the count was down from Tuesday’s record-setting 1.6. I also received my Tuesday Tacrolimus level, which was down to 11.6 (from a high of 16.1 on Friday). I should note – it takes 2-3 (typically 3) days to receive my Tacro labs back; I’m not sure if that’s just because Asheville is a smaller mountain town, or if this would be typical were I working with my MN hematologist in the Twin Cities. Obviously, the NIH has capabilities that most clinics simply cannot provide – it was nice knowing what my levels were on the day of my test and adjusting accordingly. With this method, Dr. W and I tweak the dose and then it takes about a week before figuring out if our adjustment has worked.
Anyway – with a lower Creatinine number and feeling better the way I have, I’m sincerely hoping Friday’s Tacro level is down as well. And I can happily say, that my feet are no longer resembling “little boats”, although I’ve worn compression socks non-stop and have generally tried to keep them elevated when I’m not in clinic or on a trail.
After my labs and infusion, I made my way to Bent Creek and enjoyed solitude in the woods. I can feel myself getting stronger, and while I know it’s going to take time, it just feels good, hiking up a hill and making it to the top without stopping, brisk pace and all. Yes, I counted my steps and yes, I only counted to 300 – but still, 300 more steps towards a stronger body. I’ll take it! (And obviously, I say this on a day when I’m feeling good…there have been days, and will be more in the future – where my body just didn’t feel like being pushed. Not wanting to make myself ill, or bring on an unexpected case of GVHD, I generally try and listen).
After my hike, it was a stop at the grocery store for dinner. Originally, I was going to do “flatbread” – an Amy’s Pizza to me, a flatbread thing to Andy – but watching the curtain of mist and rain descend over the mountains, I yearned for something hearty and warm. Freezer meals of chili were an option – but the act of cooking (baking, too!) has been soothing as of late, and when I spied a mix for Beef Stroganoff, I knew it would be a winner. I quickly googled a healthy Stroganoff recipe and happily already had most ingredients at home, save Worceshshire Sauce (can anyone really spell that?), onion, portobello mushrooms and steak.
Dinner was, simply put, fabulous. More importantly, it worked with my system – I still am not a fan of really dry foods, so the moisture of the stew over egg noodles (thanks Debbie!) was perfect. The best part? Connecting with Andy – there’s a relaxedness about Friday evening (currently) in our house (meaning that he works M-F and I haven’t yet started graduate school. I’m not sure what my weekends will be in the future. Thank again – nobody is sure of what their weekends will be in the future. Makes it kinda exciting!). It was fun to unwind, watch the rain and be together.
I’m feeling MUCH better than I did in the first part of the week, or even last week. I feel safer knowing that my Tacro & Creatinine counts are coming down, and my body in general feels better – meaning skin, eyes, lips are all less dry, I’m not dealing with random bone pain, headaches are mostly gone, I don’t have boat feet, etc.
And finally – because you can never have too many cat pictures. She needs no introduction.