This was just getting ridiculous, so I decided to catch up. This is, after all, my blog – I really would prefer to write about the day that I’ve had rather than challenge my memory of what happened yesterday. I’ll probably get a day behind again, but oh well – it is what it is. So here’s Monday and today!
Monday was very very low key, with no appointments or places to go – I mostly tidied up around the house, paid bills, organized and did things I had neglected over the weekend. It was very relaxing, actually. There’s something so incredibly satisfying about putting things away, or just throwing them out all together, it makes me feel good. Plus, with a zillion (yes, a zillion) trips up and down the stairs, I still managed to get my heart rate elevated. Also, with my toe recovering, keeping things on the easier end just seemed smart for my long term toe health.
Monday evening was Mac & Cheese with tuna and veggies for dinner, followed by pool league (billiards, not swimming). I made a very very brief appearance at Fat Cats and lost my 8-Ball match to an awesome opponent. Regardless of the outcome, I’ve always enjoyed playing Amber; yesterday, I lost with particular flourish, pocketing both the Q-ball and the 8-ball in opposite far corner pockets at the same time. What can I say? Talented. Seriously, I was trying to hit the 10-ball, but instead it did some complicated bounce/ricochet and I knocked myself out of the game. Oh well. As I told Andy and Robbie, “there should be a patch for that.”
Today – Tuesday – was good, much busier, but great. It started with Andy bringing me coffee in bed, so that means the day is going to be GREAT. I was virtually on-time for my 0900 labs, walking through the front door at 9:01 am. I think I startled Theresa at reception, but she played it off well. After labs, I returned to HEW for a fun workout; there wasn’t a lot of running, and even with my toe, the workout felt manageable. I tossed in a quick walk at Bent Creek (running shoes make a HUGE difference with my foot) and returned home to eat (Muselix, of all the things), shower and head out to my 3:40 hematology appointment. Again, Theresa played my 3:40 arrival off well and we chatted until I was called back to Dr. W’s office.
My labs are looking OK – White Count is at 3.1, hemoglobin steady above 11, Platelets at 160 and my Absolute Neutrophils dipped to just shy of 1500. Valganciclovir, my CMV (Cytomegalovirus prophylaxis) antiviral medication is notorious for lowering blood counts. Add in the fact that typically, it takes 6-12 months for one’s immune system to develop after a Stem Cell Transplant – I’m just practicing patience while my body and new stem/blood cells do their thing. I need to mention – none of this would be possible without my anonymous donor…I think of him every day and am grateful! Anyway – labs are holding steady, except for…..my Creatinine level (of course). Today, my Cr was 1.33 (normal range is 0.6-1.0), so after the appointment, I was given – you guessed it – fluids. Today, it was only 500 mL, as Dr W and I were chatting post-appointment and the infusion center closed at 5 pm.
Dr. W also took a look at my toe – and was sympathetic, especially after dealing with his own toe incident recently. He gave some good suggestions, prescribed something to help manage the pain, and told me not to worry. If this isn’t feeling better by next week, let me know and we’ll go a different route. I really appreciated that. It can feel awkward advocating for yourself – Dr. W took the time to listen to my concerns and didn’t just brush this aside. I’ll be honest – while backpacking,I’ve broken my foot (cuboid bone in the Grand Canyon) and large right toe (second to last night of the Colorado Trail) – Sunday’s incident felt on parr to both. Oh well; don’t wear flip flops and compression socks while moving furniture. Lesson learned.
And in other good news – my coffee prep for tomorrow! I’ve even set up the machine and everything!
Otherwise, I’m feeling OK. My face skin continues to just feel – odd. Tight at times, not really dry, and a potential for rash-y. Maybe this is rosacea, perhaps its Tacrolimus, or maybe my new donor cells are just not happy with my face? Who knows…but it’s a work in progress as I work with my dermatologists and figure out what works with my skin. I’ve continued to use the ZBar from Vanicream as a basic cleanser, and have switched to Vanicream’s Moisturizing Lite Lotion for my face – thankfully less greasy and thick than it’s Cream counterpart. After washing my face, I continue to use Metronidazole for rosacea; though last week after 4 days of hydrocortisone (topical steroid) use, my face felt MUCH better. Nystatin cream helps my Angular Chelitis (cracks at the corners of my lips), and I use the powdered form to help with whatever yeast-like infection is occurring in my bellybutton. Yes, this is embarrassing, and yes, this makes me roll my eyes. But its also a big part of post-transplant life and living with immunosuppressive medication. I’ll be thrilled in a week or two if the NIH gives me the All Clear to stop Tacro.
The skin on the rest of my body is less dry, thankfully – though it does tend to tighten after a shower. I can reach most spots – the middle of my back is not one. Restasis, medicated eye drops, have started to really make a difference with my eyes by increasing tear production. In turn, my eyes feel less dry and tolerate contact lens usage much better than two months ago (though I still don’t wear contacts for any extended amount of time). My eyes remain sensitive to light, though. My mouth is also less dry (huzzah), and I don’t need as much chapstick – but let me be clear, I still need chapstick. Other areas of my skin – behind the ears, for example, or between my eyebrows – where there’s flaking, I’ll use petroleum and that helps as a skin protectant.
Otherwise, I’m just trucking along. Drinking a lot of water ( I love my kidneys, I love my kidneys) and just doing little things every day to help make myself feel better. Sometimes that involves silly things like inverted pushups or a long hike in the woods, whereas other times, it involves snuggling with a kitty while listening to classical music. There’s not really an incorrect option, as long as I’m listening to my body while honoring its needs.
Tomorrow I’ve got a dermatology appointment promptly at 9:00 am – so the coffee maker is set for 5:00, giving me time to contemplate 1) going to the gym or 2) hitting the snooze. Honestly, my toe will likely dictate my decision. Regardless, I’m hoping to meet Andy for lunch – and depending on my body/toe/weather, explore a new trail. Andy’s Mom & Stepfather are coming over for dinner and I’m looking forward to seeing them, as it’s been since before my transplant that I saw them last. Andy’s family is awesome, what can I say? I’m fortunate to have some wonderful people in my life.
With that – goodnight! BB agrees…have a terrific Wednesday!