Moving Home
Or...Adventures with Eddie the Night Nurse
So before I got derailed for a few days but a hard day (and a 3 year old who has started getting up in the middle of the night) I was writing out the timeline. So she was just discharged from the hospital. I feel a little like the grandpa in the princess bride about to start a tale of daring heros, ever lasting love, triumph of good over evil, and pirates.
We brought her home. Thank the dear lord that her brother John and one of her nearest sister-friends, Jen, were visiting so I wasn’t on my own right away.
In fact, let me pause her and say again just how incredibly thankful I am for all the people who came to visit. I would list them but I might forget someone and I would feel terrible. You know who you are. You made our lives bearable and possible for this whole period of time. Especially a certain former executive director of Unity Church who came out…16? 15? times between May 2022 and February 2024. And Godparents who are always there when you need them. And ministers who are family. So. Many. Ministers.
She had barely moved her body in the hospital. A fact she realized a few days before she was discharged. We finally sprung her one day and wheeled her down to the hall to look out the window. For the few minutes we were in the hall I turned to my mom and said, “you realize this is the farthest you’ve been from that bed in weeks?”. She didn’t, of course, because of all the travels she had gone on in her imagination.
I had arranged for a night nurse to come so I had a dream of getting some sleep. She was determined he would be there for as short a time as possible. His name was Eddie and I’ll say a big thanks to him as well. She wasn’t a terribly willing patient and didn’t cooperate with his requests like that she wait for him to get out of bed (fall risk), or that we put away the rugs (trip hazards), or that we get night lights for the hallway (death trap). Three weeks he was with us before she convinced me she was okay on her own. I made her use a baby monitor in case she fell I would know. She said it felt like aliens were watching her sleep.
In November of 2022 she started palliative radiation on her sinus tumor to reduce it’s size. She was working with OT, PT, speech pathology and had radiation everyday for 2 weeks. Her ultimate goal: a trip to the beach with her friends, dogs, and, because she didn’t have much choice in the matter, us. Her PT worked furiously with her to get her able to use the stairs again. She did it. She was beating the odds every day. Her tumor was shrinking. Her face looking more and more like the mama we knew.
But, still, a looming question - how long did she have left? Could she make it to Christmas? How about New Years? Maybe her birthday? While she was in the hospital we met with their head of oncological research who said her best bet was an immunotherapy that was recently approved, showing some promise with mucosal melanoma. Her Kaiser oncologist wasn’t keen because the immunotherapy had caused this adrenal imbalance which precipitated her seizure. For the time being we were at the end of the road. Then he called back and said, “I want you to call Dr. Katy Tsai at UCSF. There is a trial there that might really help.”
Breathe. Okay. Call UCSF. We’ll probably have to wait for a few weeks for a call back. Nope, they called back the same day. The wait for an appointment must be months. Nope, they had an appointment on that following Monday (it was Tuesday). Could we make it down to the Bay Area? In some miracle we were already going to be there for my mom’s 70th birthday. I extended our tickets and took a few deep breaths. Here we go…
I am so appreciating these posts. She’s still so present for me right now.