Limping into May
“I wonder if I’ve been changed in the night? Let me think. Was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I’m not the same, the next question is ‘Who in the world am I?”
Alice, from “Alice’s Adventures in Wonderland”
Ana went back to school on Monday and seems totally fine. The fever that landed her in the E.R. on Saturday night left as mysteriously as it appeared. Her labs all came back negative for viruses and infections, although I’m not 100% sure they are all back yet. Her liver enzymes were still elevated and the main reason I haven’t updated the blog is I was waiting for the results of her latest bloodwork – drawn this morning at Benedictine Hospital (I took her there instead of Dr. Denno’s office because we get the results much faster since they are processed right in the hospital).
The good (great) news is that Ana’s liver enzymes are going down again and she won’t need to get a biopsy this week. She will need to have labs drawn on Monday as usual.
I’m definitely relieved that she won’t need a biopsy this week, but I’m also not feeling particularly enthusiastic right now. I’m still fighting a bad cold, and I just feel very run down – physically and mentally. Plus I’m worried.
I have no idea why she spiked a fever and I can’t stop worrying about it. What can it mean? What will next week mean? What about next month? How do I wrap my arms around the size of this?
I don’t know how to navigate the new post-transplant landscape where rules change every day and even the smallest things – like fevers and head colds – are bigger than me. I used to be able to handle these things with hugs, tea and maybe some motrin. But now I have no idea what I’m dealing with, and motrin isn’t good for her kidneys so I don’t even have that anymore.
I thought May would be a month of optimism and renewed energy. But I feel like I’m struggling forward, taking big, slow steps through thick sludge that sometimes lets up, but then pulls me back in. I think it was easier to be optimistic before the transplant, when I could idealize her recovery. The reality of infection, rejection, hospital visits and complications didn’t factor into that fantasy. I think there’s a part of me that thought it would all be over – finally – after the transplant and we’d just push forward, leaving cancer and hospitals far behind us. There’s a stubborn part of my brain that still won’t accept that this is all happening to Ana (has happened to her).
I need to let it go and be grateful for each moment – the way I know Jessi did.