Every time I lost her, she returned to me

Four months ago today, on July 29, I called 911 at about 6 a.m. because Sandy was unresponsive. It had been a very hard night, our second night home from the hospital.

The first night had been good, reassuring. She'd had some energy and some optimism that first morning, eating the biscuits and fried eggs her mother and I made for her, reading a New Yorker and shouting out commentary about what she was reading. Things almost felt normal. And then her constipation had become unbearably painful, and she finally fell asleep just in time to have to wake up to go to radiation.

After her radiation treatment, we met with the radiation oncologist and the nurse. While we were talking to them, Sandy was suddenly in terrible pain. Her head was pounding; she was whimpering and shrieking in turn. I pointed to her and said, "This. This is what keeps happening. What can we do to help her?" The radiation oncologist looked at her and said, "This is not typical."

How many times did I hear him say her reaction was not typical after the first negative response and then that day? How many times did I tell him I didn't care about typical - I cared about Sandy?

Lying down with a cool cloth on her forehead helped, and then our goal was just to get her back home. Her mother had gone out to lunch with relatives, so a very kind aide wheeled Sandy outside while I fetched the car, and then she and I somehow made it back into the house when we got home. She lay down on the sofa, took pain pills, ate a little bit. And vomited almost immediately.

She'd made a massage appointment that morning, when she'd been feeling good, and she was determined to keep it. We had to park a couple of blocks away, and she painfully trekked to the massage studio with her walker and me to steady her. I helped her get ready and left her in the hands of a masseur she hadn't met before, after talking with him about her fragility and giving him my cell phone number. When I returned, they had just finished. He told me she had vomited, but they'd gotten it cleaned up okay. As I helped her dress, I asked her how it had gone. She wasn't at all satisfied with the massage, but didn't think she'd had any nausea. She had no memory of vomiting. As an isolated incident, her lack of memory would have disturbed me. Given all that she'd been through in the past two weeks, I was just glad she wasn't ashamed.

I'd bought food for us while she had her massage, but she didn't really want it. She wanted to go to the TV room, to spend some time on her computer. We laboriously made our way down the stairs and she settled in at her computer desk; I took my food out and started to eat. Almost immediately, though, she said she wanted to go back upstairs. I suspect her computer confused her. Just then, the doorbell rang. Emily and Jo had arrived with flowers and support, so I enlisted their help in getting her back up the stairs to the living room. She was growing increasingly confused and tried to use her walker on the stairs. She'd just lain down on the sofa when again she vomited.

It was an awful cycle, one that we repeated several times over those last five weeks. She needed to eat in order to regain strength, keep her sodium levels up, and stay lucid. But once she started vomiting, she spiralled downwards. She got upstairs to bed, and I spent the night trying to wake her at the appropriate times to eat a little bit and take her pills - but she was already fading, so for each medication, I'd have to wake her multiple times before I was confident she could take a pill, and then I couldn't waste time explaining or we'd lose our window. It was exhausting, frustrating, and left me feeling both helpless and hopeless.

Finally, she returned from the bathroom around 3 a.m., confused and physically clumsy, and she tried to get back on the bed from my side, which did not have the stepstool. She practically fell a couple of times before I finally got her sort of shoved sideways, diagonally across the bed, but I had to work to keep her from falling off the bed as she fell into a deep sleep. I lightly dozed for hours, holding her in place. When I tried to wake her for more pills at 6 a.m., I realized how unresponsive she was, how stupid I'd been not to call for help earlier. I called 911 and they pretty quickly took her to the ER, where it was determined that her sodium level was too low.

When she had seizures in 2004, I didn't hesitate to call 911. But this summer, we'd grown so used to pain and distress that it became harder for me to recognize when we'd moved beyond what we were capable of dealing with. I know now that we should have gone to Urgent Care that first night after radiation, when we thought she had a bad migraine; we even discussed it but together we decided they wouldn't be able to help. (So many people had failed to help her with her neck pain and nausea the previous two months.) We probably should have returned to the hospital the night of July 28, when the vomiting was out of control. But in the moment, when all of life has already turned upside down, it's hard to know where the lines are.

In the ER., Sandy slowly regained lucidity and became aware of who and where she was. She faded in and out that day, one time alert enough to know that she wanted to call to Laura - but then completely confused and goofy on the phone call. She'd started to fade again later that evening until we began spooning broth into her mouth, and then suddenly she was talking intelligently about the presidential candidates.

That day, I lost her and got her back, just as I'd been doing since June 15. Even in the last stages of dying, after she stopped eating and drinking, she came back to us for another 36 hours (though often she was talking to hallucinations).

As desperate as I felt when I'd lose her, I came to know that she'd return, that I'd always get her back. The last time I lost her was on July 19. I'm still waiting.