Back at Home and in the care of Hospice and many friends

Hello, PostHope readers. I am back at home (with Jason ghostwriting for me). In early December, MD Anderson said that although my MRI scan looked better than the last, they were dissatisfied with my physical progress. Apparently the scan is irrelevant in the face of declining functioning, just like I heard in Dr. David Berry’s neuropsychology class way back in grad school. Just ask him. He’s super social.

So, we returned home from Houston, and soon called in hospice for help with my care. They are doing a fine job, except that they make me do a lot of hard work. Especially the PT guy, who is named after the dog of Kim and Jay, whom we have known since we lived in Lexington. He’s a really nice man, but in order to remember his name, the first thing I thought to tie the name to was Kim and Jay’s dog. I feel bad about this but it does the trick. Forming new memories is kind of a challenge right now. 

On the brighter side, I acquired a fancy new hospital bed. It is very comfortable and is easy to adjust so I can get in and out of it easily. I’d rather have a Tempur-pedic (also from Lexington), but that wasn’t offered. No updates on the rollator, but it has largely been displaced by the fancier wheelchair, a “travel chair”. They’re both hot pink, but only the rollator has animal print. 

We had old friends from grad school come down for my birthday, and had a lot of fun. They located a local bakery that makes truly keto desserts, and bought a birthday cake for me. It seems that they passed up seconds, as if a keto cake just wasn’t what they were in the mood for. I loved the cake, but not as much as I loved the people.

Christmas Day was also fun, although I am having some trouble remembering it now. So is Jason. My siblings, Steve and Christina, and all of my parents were here to visit. I matched my mom in my PJs, and Aidan handed out presents in order of age, starting with himself. 

Since the holiday whirlwind, and all my wonderful visitors, I have been resting a lot. Dr. No Naps has given the green light to unlimited naps, so I am going to take advantage of that in case he changes his mind. However, I have not taken him up on his unlimited cake suggestion. That just feels too much like suicide. 

Yesterday, a Lubbock friend, Irma and Aidan conspired to take me to a movie, and next thing I knew, I was at Uncut Gems, and unconventional Adam Sandler movie. I thought it was good, and I am glad I went. 

I learned that hospice isn’t just morphine bags to off me, which I have heard can happen and which scares me. Instead, they cover a very wide range of care. But, I am still feeling like I am in limbo about what comes next. It is hard to sit and wait and wonder if I have just forgotten, or if I need to be preparing for treatment. For now, I will try to focus on staying the course on diet and looking for research, while slowing my decline as much as possible. I am not going gently into that good night (Dylan Thomas).