Day +126, Tuesday

Photo of the Day: Monster and me. I was going to do a selfie while on the phone and taking notes – then Monster jumped on my lap and glared at the cat facing her. How could this NOT be my Photo of the Day?

Seriously, I now have a better understanding of why WheezyBear runs away when Monster approaches her. I laughed at this image – but if Monster looked at me like this, well, I would probably run away too.

Today was busy, but not bad, mostly because my lab draw was in the morning and I returned to my hematologist’s office later in the afternoon. In the interim, I made dinner, finished baking cookies for a friend and dozed while watching an episode of Survivor Season 40. I sang loudly and out of tune driving in the car to my cookie delivery, got slightly lost looking for the appropriate freeway exit, and managed to only be 5 minutes late for my afternoon appointment. I’m doing my best to not use GPS and learn the Greater-Asheville region on my own (and sometimes, its just really lovely to get lost and see if I can find my way home)…but there were several times today when I found myself thinking – how did I ever find anything before GPS?!

I’m thankful for technology and let’s be honest – Science Rocks!

Blood counts are OK. My Tacrolimus level is back within an acceptable range at 6.6 (my NIH Team wants between 5-8…the other week, I was at 11.2). My creatinine level is still a tad high – I will continue to drink water – and interestingly, my liver function was just a bit high. Dr. W. doesn’t believe it has anything to do with Graft Vs Host Disease – but it was worth noting that my liver was working harder than it typically does.

We determined that perhaps my use of Tylenol could be to blame. With four cats in the house (yes, four), and a dander allergy in the past, I’m sure their lovely fur is just exacerbating my nose and new immune system. I’ve noticed that my nose is less stuffy when I’m away from the house and in the fresh (not-yet-pollinated) air; but BB, WB, Ali & Monster are all wonderful parts of my life and they are here to stay. Anyway – I’ll take Tylenol to help with a sinus headache and it usually works. Dr. W also reminded me that Tacrolimus is just a terrible drug on the rest of my body; likely when I’m no longer taking it, I’ll be fine to take Tylenol and my liver won’t be affected. But in my current post-transplant space, Tacrolimus is an essential drug. Thankfully, per the NIH protocol, I no longer need to take it after month +6.

The other exciting news, is that we permanently changed my Thursday morning lab draws to Friday. Originally, Dr. W and I chose Tues/Thurs because those were his Clinic days; but because I’m doing well, with no major issues, we felt comfortable pushing back the Thursday draw, in an effort to get a slightly more spaced apart glimpse of my counts. Oh, and I was also given the green light to start a Vitamin B Complex, and prescribed Nystatin, an anti-fungal cream that can help with the Angular Cheilitis on my lips (essentially deep cracks on the corners of my mouth). I had this at the NIH pre-transplant, but it seems to continue bothering me, so we’re giving this a try.

The rest of the evening was spent filling my prescription, navigating the mucky waters of health insurance, eating a yummy dinner of spaghetti squash + beef & mushroom homemade marinara sauce with Andy, and finishing up the final episode of Survivor Season 40. And I also had a cookie – or two.

That’s all I’ve got – stay safe everyone & goodnight!

  1. You and Monster – what a twosome! Your portrait is the best. How could anyone not love the two of you?? Keep the portraits coming. And, with my famous sense of direction, I never want to be without my GPS.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s