Day +78, Wednesday

There were some wonderful, supportive comments after yesterday’s post and a few people reached out to me as well – thank you. This journey was never meant to be sugar coated; I do my best to be honest and true to myself, maintaining my sense of humor and voice as much as possible, while trying to respect those around me. My wish is that people who undergo Stem Cell Transplant in future and their friends/families, will be able to use this site as a resource. Not every day is awesome, and not every day is great. Some days are a total shit show (ahem, literally) and a backslide occurs. Regardless, keep moving forward, step-by-step.

“Fall seven, stand up eight.”

Japanese proverb. And my next tattoo

I didn’t sleep great, my bladder/urinary tract were unhappy. My Team and I have been slowly eliminating medications, or at least decreasing some doses…after the past two days, I don’t believe my bladder is quite ready for this step. And let’s be honest – how reasonable can you really be when you feel as though you’ve got a UTI?

Yeah, my thoughts exactly.

These pesky urinary symptoms & pain are likely still the result of my BK infection. There’s nothing that my Team can do, aside from help to alleviate the symptoms with Pyridium (UTI relief) and Oxybutynin (bladder spasms). It’s all on my new immune system to kill the sucker once and for all; tougher to do when I’m on Tacrolimus. I remind myself that this isn’t forever. And then I drink more water.

Other issues include my skin – I’ll call it baby acne. Some mornings I feel bumps under the skin of my cheeks and jawline, or I’ll have what appears to be a small rash. The next day – gone. It could also relate to constantly wearing a mask – macne, if you may. I plan to bring it up tomorrow at my appointment. On the bright side, the rash on my shoulders and arms is behaving and hasn’t flared up, even while I’ve been off steroid creams since Monday. I’ll toss that in a tentative “win” bucket (for now).

In spite of my sleep, my day was actually really nice. I had tea this morning and chatted a bit with Mom, made an appointment for a wig fitting, and established a direct connection between my AVL hematologist’s nurse and my NIH Team. And then I decided to head out solo, to Front Royal and Shenandoah National Park for a longer hike.

It was lovely and tough, a trail that I never gave much thought to before, when I was healthy during my pre-transplant life. Today, when the pitch got steep, I kept my head down, pace steady. I would pause sometimes, to catch my breath – but always always returned to the comforting sound of my feet steadily moving up, air filling my lungs, poles skewering leaves. It felt good to listen to nature, the chattering of birds, a creek gurgling somewhere, wind moving through a winter forest. I was happy. I felt like myself.

90 minutes and 4-ish miles later, I was standing at my goal – the Dickey Ridge Visitor’s Center. It was a tad emotional for me. Every time I go for a hike, am able to use my body, fill my lungs with air, I am grateful. Prior to my transplant, I wasn’t sure what my recovery would look like – being able to do these things are gifts.

I spent a few minutes admiring the view, sipped some water, devoured a bar and then added a jacket for warmth on my 4-mile descent. It was muddy and I slid a few times, whooped for the joy of it, but managed to stay upright (thank you hiking poles!). Unfortunately there were no bear sightings, but I did see lots of cardinals and three deer. My 75 minute return drive to Bethesda was uneventful. Andy kept me company and it was nice chatting with him – we were both in a better headspace.

And that’s pretty much it. Back at the apartment I knocked out my 30 pushups via 6 sets of 5 (ow ow ow ow) and showered while Mom made dinner. It was incredibly thoughtful and I was very appreciative. Later, she told me about her yoga today and I asked questions about body temperature and menopause. If Neil Diamond made an appearance, I didn’t hear him.

Tomorrow I’m back at the Clinical Center, and then have a pre-surgery appointment at Walter Reed for the basal cell carcinoma spot on my left ear. Cheers to another day done! AND to kind comments from friends & loved ones.