Day +122, Friday

Photo of the Day: BananaBear contemplating heading outside amidst the rain. She choose to remain indoors, for the record. Frankly, I could relate.

It rained nearly all day today. Combine that with temperatures in the low 40s, the walk I had hoped would happen, well, it just didn’t. It was OK though, as instead I took the opportunity to do house things that I’ve neglected – namely put away clothes that found a home on the dresser rather than in the closet, deal with a billing error from Quest Labs, prepare tax documents, chat with my AVL hematology nurse, and fire off an email to Daniele at the NIH. When I think about it, the day was actually a productive one which makes me feel good.

I DID go outside to move Andy’s car; that pretty much reinforced the idea that a cold and rainy walk just wasn’t on the docket. Thankfully the weather should clear over the weekend, and I’m looking forward to warmth (as high as 70!) and overcast skies. This is pretty much perfect for my post-transplant skin/body/system.

I’m feeling pretty good overall. Yes, I reduced my Colase intake and no, there haven’t been any more incidents (just the one, thank you very much). Skin-wise, as long as I keep up with my Metronidazole 2X per day, my rosacea feels better. I also noticed that applying sunscreen helped on the very sunny days – I don’t necessarily feel it in the moment, but man…a few hours later without sunscreen use, my face and hands (pretty much the only exposed skin) sting and burn. I’ve got dry skin skin, per the norm, but using my creams and face lotions help significantly. My post shower routine takes about 3X longer than it used to, so I need to be mindful of the clock on the off chance I’m headed somewhere (lab draws, ahem). Otherwise I’m still puffy – eyes (especially in the morning), and my lower right leg (in part due to a slight bit of lymphedema). My compression socks during the day, and compression wrap at night help my leg – being upright and awake helps my eyes & face. It’s just a thing…new stem cells, lots of medications, new blood getting used to a 40-year-old body. There’s bound to be friction.

Lab results came back, and in chatting with Mary, I learned that my Vitamin B12 is on the low end of normal, which could be contributing to the small cracks in the corners of my mouth, called Angular Cheilitis. On the flip side, my Iron and Folate levels are OK, but my Ferritin level is high (likely due to inflammation). I’m waiting to hear back from the NIH and will discuss with Dr. W during my Tuesday appointment. I keep returning to the fact that I’m nearly 4 months post Stem Cell Transplant – my body is bound to experience wide ranging and wacky side effects. Plus, after 100 days of eating Mac & Cheese and Pasta, my body is probably ready for something more nutrient dense.

So that’s it! This weekend I have one of my favorite people and closest friends coming into town – I’m really excited to see Jenni. I know it will be weird wearing a mask the entire time, but that’s just what I need to do. I’m so thankful that my friends understand and are supportive of this. Oh – and I made Pan Bang Smash Delicious Cookies to share. Because, who doesn’t love cookies?

I love cardinals! I was lucky today – from my desk where I was working, I saw a few different pairs. A pop of red would fly by and I just watched, mesmerized.

  1. You continue to be amazing as you work through all the changes you are experiencing. I hope you have a great weekend with your friend and do enjoy the warmth coming your way.

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