Genie Alisa

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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.