Wednesday, 22 of November of 2017

Lionel’s Story: April 20th

Abby is really declining now. She rallies, but the chasms that follow worry me greatly. Even she admits her cognitive ability is threatened. She’s said she’ll always remember me. I just wish she could hold onto herself as well. So many of you love and care for her.

Every moment of the day is given to fundraising, caring for her, and sneaking app games like office workers sneak cigarette breaks. I still feel like I’ve done nothing. I have a new job but I’m afraid to leave the house Monday, when I will be 40 miles away. I may need to ask for friends to stand in for me.

Our trip to see Dr. Raxlen went off without a hitch. He seemed very compassionate and on top of things. Abby has always been plagued by diagnoses that always told her it was in her head or worse, psychological. Dr. Raxlen said that anyone who diagnosed anxiety and depression from a disease like this as a classifiable mental disorder needed to review Psych 101.

The outcome: Abby needs an IV catheter. We tried to have it put in while in Stamford, but the process is slow. Hopefully this week we can get it in. At the rate of decline, we’re looking at six months for her to live. I can’t let that happen.

Abby is asleep and I hope resting comfortably. She had a fentanyl patch put in yesterday but they are slow to take effect. At 1:43 AM she woke up disoriented and screaming in the worst pain ever.

I’m watching Svengoolie. It’s a badly needed guilty pleasure. There’s a pretty earnest but still goofy movie I’m guessing is called “The Invisible Woman”. I like Svengoolie’s corny jokes, movie facts and carnie banter. I’m a bit drained and it’s nice to dissolve the aftermath of my day in some laughs and watch these movies.