These days, when I wake up and realize we don’t have to go to the hospital or the cancer center or the clinic, it’s like having a snow day. Such sweet relief. Granted, we do have a phone call with Dr. Pachynski at Barnes late this afternoon, but it still felt good this morning as the last two days we’ve had to get up and immediately head to Carle.
I must apologize for sounding so tragic or something in my last post (I do try to keep it pretty factual) because SO many wonderful friends contacted me or left messages saying they would be glad to help with wheelchairs and visits and the like. I so appreciate it and rest assured that I made sure all your numbers are in my phone so I can take you up on it if need be. It gets complicated for such a simple thing. At the hospital they have volunteers that take you/pick you up in a wheelchair so that’s not a problem. At the Cancer Center I just don’t know. They have volunteers up in the Infusion Suite but I don’t know about for transport. However, yesterday ended working out ok. Ernie felt a bit stronger after getting fluids the day before so he decided to forego the wheelchair when we got there. When he finished his blood transfusion though he didn’t feel too strong so we did the wheelchair walker dance again and it wasn’t as hard on my back. I don’t know if I was more relaxed or what but it was ok, and I actually pushed him twice as far yesterday because of some confusion (mine) about his bloodwork.
I finally got my new fancy walker. I’ve somehow been in denial about it. I don’t know why, there’s no virtue in having a lousy walker as I said to Heather the other day. She just gave me one of those knowing Heather nods. I kept just not going to pick it up. Eventually I had Owen pick it up but it’s just sitting here in the living room. I didn’t use it yesterday because it’s much heavier and I don’t think Ernie could manage carrying that while I pushed him.
For some reason I was incredibly sleepy yesterday at the Cancer Center. I couldn’t seem to keep my eyes open which made for a moderately miserable couple of hours for his blood transfusion (but hey, POD FOUR!). When we finally got home we sat in the living room and kind of stared at each other and talked to Leo when he was home for lunch. Then Ernie drifted off on the red couch and I gave in and curled up on the couch in the media room and took a nap. It felt so good. I was so tired I didn’t even need to stretch out, I napped curled up in a little ball in what is know as my corner.
Today Ernie seems a bit stronger. He’s still not eating much. NOTHING sounds good to him, not gruel, not ramen, not eggs, not even roast chicken (his normal comfort foods) much less anything else I come up with. I’ll get some Boost or Ensure into him today at the very least. I’m sort of horrified that I didn’t even realize how much weight he’d lost. Since the beginning of April he has lost 40 pounds. He didn’t eat much the 12 days he was in the hospital although he was so pumped full of fluids the loss didn’t show until later…and then it just kept going as he got sicker.
I guess we’ll figure out the next steps to take in our phone call later today.
Photo at top: Bob reassuring himself upon Ernie’s return (please ignore the mess).