Heading back to Baltimore

We're heading back to Baltimore sooner than expected. Rich is supposed to have his staples out two weeks from surgery versus two weeks from discharge so that's tomorrow. It also so happens we can get an update on the plan from Hanna and Hausner while we're there so that's nice. Poor Rich was just getting used to being home and we have to go back. But I promised him that all we're going to do is remove staples and talk. No one is going to start the next phase of anything until he's feeling better from Phase One.

We're planning on just day tripping it, but are packing clean undies just in case. I know he will be anxious to get back home.

This trip is hard on him since he's still adjusting but I think good will come of it to merit not putting it off another week.

Pacing ourselves

So the angel of a child that fell asleep at 6:30 last night? He woke up at 4:45am this morning. Bright-eyed and bushy-tailed, ready to start his day. I brought him cereal to eat in his sidecar crib. I brought him a second bowl of cereal when he finished the first one and was still hungry. And I brought him the iPad so he could watch Netflix, which he did happily until around 8am. It was not the most restful of sleeps for us, though, because he was like that dude in the movie theatre who can't stop talking about what's going on.

"This is so crazy! Huckle is going to find the missing eggs in Busytown!" "HA! Chuck fell in the mud. He's such a silly truck." "Ooooh. This. Is. Serious."

Carolyn came over to play with Ian this morning and it was blissful! I told him she was coming over and he'd have to decide what he wanted to do and they took off as soon as she walked in the door. They played hockey and trains and rolled around a ball and worked on some modeling clay. And then she left around 11:45 because he said he was tired. He was sacked out on the couch asleep before her car left the driveway. Success!

Today was hard, though, because Rich and Ian are at such different stages of physical activity. It's particularly obvious when the three of us try to go for a walk around the block. Ian races his bike down the sidewalk so that my stomach knots up the closer he gets to the corner and traffic while Rich walks ever so carefully behind me with his cane. I feel absolutely torn between the two of them. Rich needs me to help him work through all he's struggling with, but I have to squeeze that into nap time and late in the day. And Ian has zero desire to leave the house without me holding him.

When Rich was in the hospital I wished that I could clone myself so that I could be with Ian and Rich at the same time. But now that I am with them both at the same time, I'm still wishing for that clone.

The state of things after the hospital

I don't even know where to start today. The last two weeks have been all about this surgery that was supposed to fix everything and then when it didn't fix everything, it was all about just breaking free of the hospital. But now we're home and all the worry that sat like a dark cloud over Rich has settled right back where it left off. I occasionally look over and see him wincing, expecting that he's in pain from his staples and it's just that he's worried or sad. He is so worried that it makes him wince.

One of the things I was told was that the patient is the person least able to assess their condition. You have no way of seeing how far you've progressed. So I knew that would be the case with Rich. I just didn't realize to what degree.

He has said repeatedly that he trusts me completely. So if I tell him that he's okay or that I'm okay, he believes me, but it takes constant reinforcement. Rich walked around our block this afternoon, which I just measured as 0.57 miles. That's pretty good if you ask me. He does ask me.

I remind him that we didn't get the simple outcome we were hoping for but that everyone is very positive about his prognosis. Worst case scenario is that down the road they would have to remove some organs we'd rather he keep but that he could still live without them. The better scenario is that he has to have chemo which is a drag, but would greatly reduce the stuff in his abdomen and make things easier to clean out via a second Mother of All Surgeries. (The support group actually calls it MOAS for shorthand.) The best scenario is that he doesn't even need chemo but could take some magic pill to eat away all the slime, but I'm not sure that exists in anything other than Star Trek right now. We'll know more when we meet with the team back in Maryland in two weeks.

In all these scenarios, he is still here for Thanksgiving 2013. He's even here for Thanksgiving 2023. It's just very hard to see that when he is feeling so weak. Rich isn't used to being weak and it's playing havoc with his everything.

As for me, I'm hanging in there. Our son got on my nerves today because we missed the magic nap window when he fell asleep in the car and I had to wake him up and take him in a store. After that he was awake but over-tired and literally stood in the middle of the living room sobbing. Hard on him and hard on me. We tried the smother/hug strategy to wear him down but he's more stubborn than I am, if there is such a thing. I took him for a drive and he fell straight asleep only to wake up screaming as soon as I turned off the ignition in the driveway. So he didn't really nap today. But that also means he fell asleep on the couch at 7pm so I don't even know what to do with myself with all this free time.

We had a nice quiet dinner here with my folks. Turkey, dressing, cranberry sauce, the usual. We forgot to make a dessert, but I'll worry about that tomorrow. I'm actually pleased that in the last two weeks I neither gained or lost any weight. I was first worried I would lose 10 pounds from not eating and then after devouring Wendy's quiche I worried I would come home 10 pounds heavier.

I haven't run at all since the diagnosis. I haven't felt like there's been time. But I'm going to try to fix that soon.

I know the theme for today has been what we're thankful for, but I've been thankful for so much all month and all year and all decade. I just wanted to ramble a bit about my day. I'm thankful for you all listening.