It’s important for you to understand that your experience facing and overcoming adversity is actually one of your biggest advantages.
Today I officially checked into 3NE of the NIH Clinical Center. Tomorrow I start my full rounds of chemo, with my stem cell transplant set for October 27. On today’s daily schedule “admission to 3NE” seemed innocent and not busy. In reality, there were a lot of moving parts. Thankfully, I just stayed put and most of the folks throughout the hospital paid me a visit, which made my room seem like a revolving door of clinicians. But overall, it wasn’t bad.
I DO need to say that I was able to make a second impression on the lovely doctor who came into my room while I was undergoing acupuncture therapy the other day. Yeah, I still remember the needles and embarrassment. So does he. But he’s actually a preeminent expert of Graft vs Host, and I’ll likely see him again at some point. He was still chill. I think we’ll get along well.
My day actually started with packing. It was like a tornado went through my room at The Lodge. Not pretty, but I’ll share.
But I managed to not only clean my room, but fit EVERYTHING into all suitcases and packs 25 minutes before my outpatient clinical center visit. And I was only 4 minutes late to my appointment after dry shampooing and sponging off. And if that’s not a victory to start the day, then I don’t know what is. The outpatient visit was mostly to check in with my Transplant Nurse Practitioner – touch base, see how I was feeling. We chatted mostly. I mentioned my sausage toes – which are now full fledged cankles – and also pointed out my central line and the amount of irritation it’s caused.
Cankles and sausage toes will eventually go away on their own. The Central Line would need a dressing change, which happened after I checked in as an inpatient. After the appointment wound down, I was told that I would have a few hours to spend outside before needing to check in to 3NE. So naturally, I did.
Yeah, in the first picture, I’m adjusting my compression socks. Thankfully they still fit, even if my extremities want to expand. The other colorful images were of foliage. In the next few weeks, I’ll be spending a lot of time indoors. I understand this is part of the transplant process while living in a COVID world, and I’m OK with that. I don’t have a choice.
So I wanted to take pictures of color, vibrant bursts of light that bring peace and life to nature. I see images like this on trails, running through Bent Creek, on trails and high passes Out West in my beloved Sierra and Colorado. Time passed too quickly though in that little alcove, tucked away behind the Family Lodge in my own little world.
Then 3:30 rolled around and I drove down into Patient Parking, or P1. The cones were confusing and really, they need to have better signs. At one point I tried to drive around a cone and got a massive, “HEY!!” from one of the parking attendants. It may have been followed by a lecture. But how was I supposed to know that I wasn’t supposed to go into the “NIH Police” lane? See….? Lack of clear signage. Rest assured, I made it clear this was a first from me, that I was from out of town, and I was a transplant patient about to check into inpatient. I still felt like an idiot, but, all was well.
Unpacking and organizing wasn’t bad – it just needed to get done. And I did – between meetings and appointments. I did a little photography, had a dinner/FaceTime date with Andy and was given my evening dose of completely new medications.
My hematology team has decided to start me on Lovonox, a fast acting 12-hour liquid blood thinner. The self-injection isn’t new; I’ve been administering this on and off to myself since 2010. Everything else was new, specifically the strong anti-viral medication, and two anti-seizure medications. This is because the dose of chemo is so high and there’s a risk of seizure as a side effect. I’ll be honest – I don’t mind prophylactic medications, thank you very much. Tomorrow, I’ll repeat all meds. And then start a full dose of chemo.
Side effects, you ask? I’m a bit sleepy – it’s a lot of new stuff for my system and one of the anti-seizure also works in tandem as an anti-anxiety, which isn’t all bad because even while flipping between cable news channels, I feel very relaxed. Sleepy too, which isn’t my normal reaction to cable.
And finally, because he loves me so – Andy left his favorite jersey, the one he wears EVERY Sunday, spritzed with some cologne for me. I supposed this will make me a Panthers fan. I think this was his plan all along.