Pandora's Escape Box

Round one of the treatment took her “blood count” (AML indicator) from 20 to 1. As I understand it, there is good reason to assume the second round will likely result in remission, at which point she would transition to a less intense ‘maintenance’ program.

Round two has been harder for her. She’s been fatigued and dehydrated, and her bloodwork warranted blood transfusions.

She has not been aggressive about hydration and nourishment, resulting in increased toxins in her system. She’s been prescribed sleep medication that she’s indicated is not helping. And then, this...

Saturday night, 1/2 way through this second round of Chemo, after several days of not sleeping and increasing instability and discomfort, Tommy and I took her to Stanford’s ER, the home base of her care team and chemo treatment program, Stanford Cancer Center. This resulted in another completely sleepless night.

They assessed her risks and condition. They admitted her to the Cancer Center for two days of tests and observation during the last two chemo treatments and to manage her dehydration and sleeping issues onsite in real-time. She checked into her room around 5.30 p.m.

She called me at 10 p.m. requesting that I come to get her or that she’d take a cab.

She said, “This will not work for me.” She was in full-on defiance mode. She was angry that she was not allowed to get up without assistance. (She’s at high risk of falling due to the impacts of the treatment and her extreme fatigue) and that they needed to monitor her vitals throughout the night.

The doctors and nurses joined the conversation. They were kind, compassionate, and emphatic about her need to stay for her health and safety. I was pissed, and she knew it. I refused to get her. I told her this was all for her well-being. After I passionately emphasized how this was a critical risk and turning point and essential for her to get this level of oversight and care, she said, "... are you done?" in a dismissive manner that indicated she was ready to retort and continue to argue. I was incensed. "I AM done. Stay there." And I hung up.

She apparently agreed to stay under the condition that she could get up and move about unsupervised. They conceded to turn off the bed alarm. This was conveyed by the nurse I called about 30 min later to check in. They also shared that she said she would stay because she did not want to upset me. I thought that was a bit sad, but at least effective.

End of Shift Plan of Care Summary 

Today's early a.m. bed check revealed that she had taken her belongings and walker and left the building through a restricted access area. They called me. I checked the location of her phone. She was at home.

I understand that fatigue, anxiety, fear, and loss of control played a part in this. Still, her baseline defiance and obstinance have undermined the essential opportunity she had to complete a series of ordered and scheduled tests there related to isolating and addressing additional health concerns raised in the testing done Sunday.

Her chemo treatments were done last night and again today. The final treatment is tomorrow. My niece, her grandaughter, has graciously offered to assist her today/tomorrow while I take a beat to step aside and decompress from the various emotions that have been triggered.

I expect the treatment will succeed in putting the AML into remission. I remain concerned about other aspects of her health and well-being, mental and physical, due to the effects of the treatments, drugs, hydration, diet and sleep.

Setting aside my intense resentment that our collective efforts to get her into Stanford were undone so recklessly, it’s heart-wrenchingly sad to consider the intensity of the emotions at play for her. 

I'm equally cognisant that her actions and these incidents, along with this whole situation, are awakening an untold number of blocked emotions and discounted experiences, all densely packed into a bulging, seam-stressing box by a Greek woman named Pandora.