Update: Feb 7, 2017
Posted to Facebook on 2/7/2017
The weekend wasn’t too awful. Ana slept pretty much all day on Saturday. The miralax did the trick (can I get a hallelujah?), but now she’s worried about taking extra oxy because we’re 99.9% sure that’s why she got constipated in the first place. She rallied her strength for a sleepover at a friend’s house on Saturday night, though unfortunately was too sick to go to Best Of (PGRA parents know what I’m talking about). She felt very very sad about missing it.
My parents came for a visit on Sunday and brought goodies for the girls. This was a much needed, much cherished visit as my mom’s health isn’t great. Ana spent almost the entire visit downstairs visiting with her grandparents (on the Yogibo, of course). Ironically, Emily slept most of the afternoon away (she’d had a very busy Saturday followed by a sleepover Saturday night.)
Ana managed to go to school today, but had to really push herself. Even short trips are hard because her car sickness is very bad (she took meds for nausea before I drove her to school). She frequently struggles with nausea. It used to be because of her meds, but it’s pretty clear now it’s from the many tumors in her abdomen and bowel. Her appetite is nonexistent and when she does eat, she feels nauseous and overly full (or worse, her stomach just…hurts).
Ana is feeling isolated and depressed and it’s breaking my heart to watch her suffer like this. I think this is part of the process of her coming to terms with her failing body and her increasing inability to do things she was able to do mere weeks ago. And she’s so scared. We have daily conversations about death and dying. I’m not allowed to cry when she talks about it, so I have adopted this sort of disconnected, matter-of-fact approach to these dialogues that is KILLING ME inside. Last night, I took a xanax before going into her room to hang out with her for a while. It felt like I was going to crack in half otherwise.
This is so hard.
She’s scared. She’s angry. She’s determined and brave. Everything reminds her that her time here is short. Last night, she talked about giving away all her clothes (they barely fit her anymore because she’s so thin). These conversations – they happen almost every day. I suspect she’s only telling me a fraction of what she’s thinking about all the time. I want her to tell me all of it so that maybe, just a tiny bit, I can ease her burden. But I also worry that she’ll see the fear in my face and that will just make everything worse.
Each morning when I wake up, I feel as though the weight of the day is too much. All I want to do is stay in bed and sleep. But then I remind myself, “Ana may want to go to school. Ana’s burden is so much greater. If Ana can do it, so can I.” So I get up and start the day for her, and Emily, and Jim.
Posted to Facebook on 2/3/2017
The good news today is that Ana has been much more awake and alert then yesterday. She just now dozed off (on the Yogibo with Roo) after being up since 8 a.m.
The bad news is she had terrible pain and nausea this morning from what we’re hoping is from constipation related to the oxycontin and not a bowel obstruction. We live on fear of a bowel obstruction – it’s a major issue that likely can’t be managed at home due to the excruciating pain it causes. She managed to drink some Miralax and will hopefully get some relief soon. Right now she seems comfortable.