We'd come home from the hospital the evening before. We shouldn't have, but Sandy was determined to go home. The oncologist had given the okay on Saturday for her to go home Monday, assuming all was fine after radiation that day. All was not fine after radiation. She was in severe pain and spent several hours completely out of it on narcotics. The nursing staff assumed we'd be staying the night; I told them repeatedly that I didn't know yet; whenever Sandy woke, she was clear that she was going home.
We waited, ready to go, for a long time before a trained nurse could deaccess Sandy's port. Meanwhile, her pain worsened from sitting so long, and her mother and I kept replacing the cold cloths on her forehead. Getting her home was a challenge, and then I left her with her mother and sister while I went to the after-hours pharmacy to get her medications; she was due to receive one of them before bed that evening. Everything was chaotic.
Sandy had been desperate to go home. I think that had more to do with wanting to return to her old life, her old self, her independence and mobility than the desire to be surrounded by our stuff and the cats. Home had changed in the ten days she'd been in the hospital. Now home required a walker and my constant attention. Home wasn't easy. Home wasn't quite home. But she was thrilled to be back anyway, and that first night, we both actually slept well.
She woke in a good mood in the morning, and things looked promising. She could read without a headache for the first time in several days, and she hollered down comments about the New Yorker articles she was reading. I made her biscuits, which always felt like a treat to her, and when her mother arrived, she fried an egg to go with them. Sandy was ambitious, and she was enthusiastic about having a massage. While she still had energy, she phoned and made an appointment for later that day.
I had to go pick up another medication, one that had been special-ordered, and when I came back, she'd lost a little of her energy, but was still doing basically okay. And then the constipation got bad. I did what I could to help her, as she was frustrated and panicky, and she dropped off to sleep. But within half an hour or so, I had to wake her to go to radiation. There were two more sessions to go. Had we known she'd die three weeks later, we'd have stopped, but at that point, Sandy was just determined to get through them. Her mother helped us get to the appointment and then went to lunch with her brother and his wife. Sandy was fine during radiation itself, and we met with the radiation oncologist and nurse afterwards; as we sat there, her head began to pound and she nearly screamed. She lay down on the exam table; we turned out the lights for her; we gave her cool cloths. I hadn't brought any medication, because I hadn't expected to be there that long. I emphasized to the doctor that this is what she's experienced after every radiation treatment, but he could offer no explanation.
When we got home, she lay on the sofa and I brought her a little food and her pills. She almost immediately vomited, and from that point, she didn't keep anything down again while we were at home. She debated canceling her massage, but was so certain that it would bring her relief that she decided to go. Carefully, painfully, we got her to the car, and after I'd parked the car, she hobbled the block and a half to the massage center using her walker, with me supporting her. I remember thinking that I didn't recognize her or our life, that the vibrant, energetic, sparkling woman I'd known even a couple of weeks before, even while she had unexplained pain and nausea, had suddenly become a miserable old woman. I was acutely aware of my own health and agility; I felt guilty, even, that walking was so easy for me, but mainly I just wished I could give her some of my health. I just wanted to take her pain away and have her be fully herself again.
The massage didn't go well. When I returned to pick her up, I learned that she'd vomited during the middle of the massage, but they'd gotten everything cleaned up. As I helped her dress, I asked her how it had gone, had the nausea been a problem? She said no, she didn't care for the masseur (it wasn't her usual person, the one she thought she was making an appointment with), but that she hadn't been nauseated or anything during it. I didn't tell her what I'd been told; I was grateful that she didn't have to feel any shame or embarrassment about it.
Things steadily got worse as the day progressed, and by the time we went to bed, she was starting to slip out of consciousness. For hours, I struggled to get her medication into her at the right times, afraid she'd choke because she couldn't swallow, but needing to act quickly when she was awake. In hindsight, I should have called for EMTs much earlier, but our normal was shifting faster than I could keep up with it, and I was in way over my head. We didn't know then about the sodium drops; I thought she'd be fine in the morning as she had been the day before, if I could just keep up with her medication.
I called 911 at about 6 a.m. when she woke long enough to vomit and then was completely unresponsive. They did some quick tests to see if it was something simple they could address, and then they carried her down to the ambulance. The last time she left our bedroom, she was wrapped in a blanket her sister had made her, carried carefully down our not-to-code steep stairs by four or five EMTs. I took care of the cats, grabbed a few things, and followed them to the hospital in our car. That was the only one of the four ambulance rides she had in the last five weeks of her life that I didn't ride in the ambulance with her; twice I rode in the back with her. This time, I parked the car, called her mother from the parking lot, and went to the emergency room to begin another stressful day after little or no sleep.
I'd not had much food or sleep or, really, any exercise to speak of in two weeks already at that point. I'd probably lost some weight; I certainly didn't have any energy. Yesterday, I was acutely aware of the difference in my life this year. In fact, yesterday was nearly an ideal day. The weather was gorgeous, with a high in the mid-70's, a mild sunshine, a light breeze. I worked for a couple of hours in the morning, and then got some good gardening done before lunch. I ate, and I read a bit online. And then I got ready for a long ride. A few minutes after 3:00, I left the house to bike around Lake Washington, a 50-mile trip, including the steep way up Juanita, a climb I'd never attempted before.
The ride was a challenge to myself in several ways: I don't usually ride alone for pleasure (as opposed to transportation), so I was proud that I'd not bailed on the plan. I managed the climb up Juanita without noticeable strain. I enjoyed myself, paying attention to my surroundings and living in the moment. At the same time, I savored the memories that go along with all the landmarks along the way, as I've ridden much of that route with Sandy and with other friends many times. I didn't really start getting tired until I was about 6 or 7 miles from home, and then I allowed myself to go as slowly as my fatigued legs wanted to go. I got home before dark, ordered pizza, indulged in a long hot shower, and watched a DVD with the kitties. Periodically, I'd remember the day we left the hospital the first time last year, and I'd feel grateful that the present is not so stressful, that no one is depending on my hypervigilance right now.
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| I'd like the hiking, camping, gardening, biking, vidding, laughing, reading, baking, and wanting-to-be-the-center- of-attention Sandy back, please, with good health! |
I want her back desperately, but I'm grateful that now, though she has no body, she can be fully herself in a way that she couldn't a year ago tonight. I only wish she could be fully herself and return to me in a healthy body.
big hugs.
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