Random Notes from the Sandwich Life

1. Last night Ernie got into bed and I lay next to him looking out at what’s left of my lights. They are going, strand by strand. The lights on the fence are down to just a partial strand in the corner behind an evergreen and then what’s left of the lights on the big evergreen. I said, “Just look at them, bravely hanging on.” There was silence for a few minutes and then he said, “Oh, yes, they are true heroes, Cynthia.” I started giggling. I would stop and then he would start laughing and then I would start giggling again. “Well, yes, they ARE!,” I yelled. It took quite awhile for us to completely quiet down.

2. I eat like shit when Ernie isn’t here. I pretty much lived on gluten-free granola bars and frozen pizza, mostly gluten-free but not always. I would mournfully stare at the refrigerator and think that all I needed to do was quickly cook some vegetables or eggs or rice and then instead I would put the frozen pizza in the oven.

3. I’ve been eating too much gluten. I can eat a little bit once in awhile but not regularly and I’m feeling truly lousy as a result. Whose fault is that? Why, it’s MINE, of course. Sigh.

4. Bob totally has Ernie wrapped around his little finger, er…paw. We’re back to be being wakened by Bob meowing sadly until Ernie gets up. Me? I broke him of that habit by ignoring him and continuing to sleep. Ernie? Not so much. This, of course, is just one of the million reasons why Bob is watching over Ernie so carefully.

5. The other night we ended up ordering pizza kinda late and it was hard to find a place that was open and delivering (even via delivery services). We ended up with Monical’s which we had eaten a long, long time ago and liked well enough. The gluten-free pizza was so bad that although i was hungry enough to eat a bit, it ended up in the trash. It may be awhile before we order pizza again so I guess it’s not all bad. Scared straight and all that.

6. Tal got back home safely to England. Leo plans to head over there in July.

7. One of my favorite bits from all the doctors’ notes I’ve been reading from his time in the hospital.

I’ve read a lot of doctor’s notes over the years. Ernie often gets described as ‘pleasant’ and Vasireddy sometimes refers to me as Ernie’s “very supportive wife,” but this is the first time I’ve seen delightful used. Yes, I really liked this doctor.

8. Yesterday it took multiple phone calls to the pharmacy, to the insurance company, and to the hospital for Ernie to finally get the antibiotics and other prescriptions he needed after being discharged late on Friday. It was incredibly frustrating and somewhat exhausting. I’m over Walgreen’s. Yes, we’ve moved our account to a location that doesn’t appear to unexpectedly close for the weekend but their app and website integration is driving me crazy. Honestly, this is stuff I’m normally pretty good at navigating but they have lost me. I’m thinking about transferring all to the CVS at our Schnuck’s.

9. Finally got an appointment with Vasireddy for Thursday. Urology next week. We’re supposed to follow up with Ernie’s PCP but honestly, he never sees him and I kinda don’t care. I feel as though Vasireddy monitors everything that needs to be monitored. We again feel as though we’re in limbo. Overall communication has been spotty. When I was getting really frustrated, and honest to God just wanted access to all his bloodwork results, I called the Cancer Center and said I’d been told that I should have a Case Manager or Coordinator or whatever the hell they are called. I explained I was having trouble getting information and needed some help. They said they would send a high priority message to Vasireddy’s nurse. Later I got a call from a different nurse saying that so and so, a case manager or whatever, would contact me. Nope. Not that day. Not the next day. Not yesterday. Someone suggested since he was in the hospital to ask for a case manager or social worker or SOMEBODY to help me navigate things. So I did. Nothing. Not a god damned thing. Maybe those people could not have helped but I’m sorely disappointed in the follow through by Carle.

10. Everyone kept shrugging when I asked how I could see his test results. They were all kinda, “Well, I’m not an IT person….” I understood that…but then just direct me to who CAN help me. Nada. Finally a nurse said it depends on whether the doctors release the results. Ok, understood, so I asked if we could request the doctors to do that. The nurse shrugged and said somewhat dismissively , “Welllll, I GUESS I could email the doctor but I don’t know if they’d do it.” Later they gave me a post it with a number for MyCarle. Rather obviously, nothing happened.

Ugh, ok, I could go off on more rants but I must get to work.

Onward. Resolutely onward.

Top photo: a soup for breakfast kind of day. Thanks, Peking Garden.