10 Survival Tips for the Caregiver (So to Speak)

Oh, hey, hi! How are you? It is weirdly warm and rainy here in our part of Pennsylvania today. I’m writing this in a near-empty Panera Bread (coronavirus!), after having purchased toilet paper online because we ran out at the house (children!) and all of our stores have been emptied of it (coronavirus!). I just ate a bagel with my bare fingers that had not been sanitized ahead of time, and I expect the dry coughs to start shortly. Last week’s progress appointment with Mom’s neuro-oncologist was odd. Here’s the thing: Mom can’t walk more than a few steps at a time. Last week, she couldn’t do even that–couldn’t support her own weight at all–and after an afternoon of physically lifting her from wheelchair to car to wheelchair to seat et al, we expected to hear the worst from her MRI results. But her tumor is stable. Can you believe it? It’s just that her body is failing more quickly than the tumor is advancing. She’s also not always recognizing where her body is in space…

A Little Psychological Sewing, if You Will

I thought maybe I should spare you an update this week, because I’m in a crappy, crappy mood (a friend asked Sunday how Mom was doing, and do you know what I said? “Oh, she’s totally dying.” The poor guy looked like I’d slapped him in the face). Mom has been declining again–no sooner did we pull her off hospice than she started acting like, well, maybe that wasn’t the best idea. She’s grown progressively weaker, and has become just sort of older-seeming. (This cancer of Mom’s likes to keep us on our toes, but I much prefer the happier surprises, you know?) On Saturday, David and I had made plans to take the kids to see Mom in the afternoon and have a movie day. The kids were excited–they’d settled on Jumanji, because “cake makes me explode!”–and Mom had been looking forward to it. We went tumbling into her house around 2:15, a big bowl of freshly-popped buttered popcorn in hand, but Mom was nowhere to be seen. The house was quiet…

See You on the Flip (Phone?) Side: Leah’s Doing a Digital Detox

Hiya, friends. Life in Brain Cancer Land has been frustrating this week. Mom is declining again, but we’ve been forced to revoke her hospice benefits in order to allow her to keep receiving the every-three-week Avastin infusions that help keep brain swelling down. We’d signed on with hospice with the understanding that she could keep receiving Avastin, but the provider’s pharmacists raised the red flag a couple weeks ago: even though the treatment is only palliative at this point, our buddies in the office recognized it as a chemo and refused to allow it because it’s still considered a life-preserving treatment. I get it, I suppose, but it’s hard not to get the impression that Mom’s not dying enough for them: her hospital bed was removed from the house within four hours of me submitting the revocation form. But this post isn’t about my mom. It’s about, well, me. It’s no surprise that the past year and a half has been a struggle. But a lot of it is my own doing. Let’s start with this: many…