Day +65: Windy Roads, Coffee and Wings

This has been a big week. Yes, Matthew graduated from college. And yes Noah finished up his freshman year at Lehigh. And yes they’re both home. And that's great.

But that’s not what I’m talking about. 

This week I started having coffee again! Man, I missed coffee. But what makes it a big week is not just that I got to drink the coffee, but that it tastes like, well, coffee. Which is a big deal. For the better part of two months food just hasn’t tasted good with very limited exceptions. And that made eating more of a chore than something to look forward to. But somewhere around day 54 or 55, food started tasting more like its normal self, and my appetite simultaneously returned. I started looking forward to dinner instead of dreading just making it through it. And tonight was the culmination of that when Stacy used her new air fryer to make a variety of really tasty chicken wings. Yum. 

In the long serpentine path to recovery, it’s another corner to turn. I remember talking to my brother, maybe around day 35 or so and I was having a particularly challenging weekend. But the next day, it felt like my energy levels were climbing and I had turned a corner. Then last week, I started working and with that, I turned another corner. And now my taste buds are back and that’s yet another corner turned. I'm still a long way from recovered, and  the challenge with a winding road is that it’s really hard to see what corners like ahead. I know there are more to come but here at day 65 I feel like the path is perhaps straightening out a little bit.

Day +54: Balance

Life is a balancing act. So too, is managing my meds. It starts with tacrolimus, an important anti-Graft-Versus-Host Disease (GVHD) medicine. Of the seven different meds I'm currently on, this is probably the most important. Because we know kidneys (particularly my kidneys) are sometimes not a fan of tacrolimus, we've been adjusting the tacrolimus to see if my creatinine (a measure of kidney function) levels will return to normal.  So we adjust the daily dosage, check levels and see where we are. But if we drop the dosage too much, and then the tacrolimus level will fall too much.

So the last couple of weeks have been just making sure we've got things right. And it seems like things are moving in the right direction. Creatinine levels are coming down, and tacrolimus levels are within normal range. Meanwhile, potassium levels are hovering in the high but manageable range. 

We'll check it again at next Monday's appointment and we may even talk about going to biweekly appointments if my lab work supports that. We'll see. There's definitely a comfort level being able to see my NP each week, but the drive in, the waiting, the being surrounded by a bunch of people (all masked, of course), I could do without that weekly routine. And if the care team feels I'm good to go to a two-week schedule, then I trust them. 

In the meantime, importantly, my energy levels are doing real well. I still need a good 9-10 hours sleep. But there are also signs that my appetite and taste buds are slowly coming back. That helps everything. It makes eating less of a chore; it helps my digestive system; it gives me energy. 

So does working. I started on an official half-time schedule. It's great to have the social connection with all my colleagues again. And it's great to use my brain for something other than a crossword puzzle! Plus, it helps make the days pass quickly. But I've been careful to schedule some downtime each day so I don't overdo it, because here too, balance is key.

So far it's working out.