It's been one week 🎵 (Barenaked Ladies - IYKYK).
Today was a rough day. Physically, Andy is doing amazing. Mentally, we are hitting a wall. And maybe me more than him.
It's like the movie groundhog day. Each day is the same. Each day is exhausting. I cried more times then I can count. And then I'd look at Andy, who is a freaking rock star and hasn't complained once, and I'd cry even harder. We both feel the monotony of driving to the hospital every day. Waiting. Every day. Uncertainty. Every day. Worry. Every day. Relief. Every day. It's not hard. But it's exhausting.
I made a big decision today to start taking 1/2 days at work. My job has been incredibly gracious and incredibly flexible, but trying to ensure I'm working full-time, while cleaning the house, doing the laundry, and coordinating kid schedules has pushed me to the edge. And honestly, after just one day of a 1/2 day, I feel better. This afternoon I focused on disinfecting the first floor, washing the sheets, I got to take a walk in the sun with Oliver, Eleanor, and Debbie. I played a game with Oliver and we all ate dinner as a family. Andy is currently putting away our dinner and doing the dishes. It's hard to let him do these things. But it's hard for him to let me do most everything else. So I'm sitting in here, typing this update, and having a glass of wine. He needs to feel normal too.
I'm just being real. I'm just being raw. I sometimes feel a bit more guarded, narrating this journey, knowing 16 year old eyes (Hi Eleanor) is probably reading. But we are all real and raw with each other, so I may as well document it for Dana of 2042 to reflect on. Just as I sometimes reflect back on the blog of 2010/ 2011 (yeeeesh. That was RAW!)
Medically, Andy is doing amazing. His appointment today went well. His platelets dropped - again. Those dang things are more fragile then I ever knew. So we had another transfusion. The lab wasn't as quick to release this time, so there was waiting. (This was my deciding factor to start taking 1/2 days too - I'm so tired of trying to work on the slow Froedtert internet!) Andy slept.
He lost some more weight, but BP and heart rate look good. We avoided another day of fluids. Could we possibly avoid fluids this entire time? Looks like we are going to avoid a blood transfusion. Hg hanging strong. We felt frustrated needing platelets, but our nurse said probably another round or two.
There is a potential we will start to see Andy's numbers start to trend upward toward the end of this weekend! I cannot tell you what that is going to feel like.
Of course, then we need to worry ("worry") about Engraftment Syndrome. Doesn't is sound TERRIBLE?! It's not. It's just a period when Andy's new cells start to take over his body, his WBC / ANC starts to rebound and he could develop a fever, rash, diarrhea...basically all the things we are currently watching for, but the result of something different. Treatable. Manageable. Just one more thing. Well. We'll worry about that tomorrow.
Tonight. We all need good sleep. Tomorrow. We'll do it again. And we'll be grateful for it.
Prayer warriors. I'm asking for you yet again. I swear we will pay this forward. But just a little longer, please. We see a light at the end of our tunnel. It's getting a tad brighter, but we are still laying on the floor and you have absolutely no idea how much your strength and encouragement keep us going. Each of you are our little God Winks, keeping us going. Keeping us positive.
OH! But don't worry...at least today I remembered my notebook! 😏💖
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